Bill S-201 (Historical)

Genetic Non-Discrimination Act

An Act to prohibit and prevent genetic discrimination

This enactment prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract with, or offering specific conditions in a contract with the individual. Exceptions are provided for medical practitioners and researchers, as well as for insurance providers in respect of high-value insurance contracts if provincial laws expressly permit a requirement that existing genetic test results be disclosed.
The enactment amends the Canada Labour Code to protect employees from being required to undergo or to disclose the results of a genetic test, and provides employees with other protections related to genetic testing and test results. It also amends the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics.

Expungement of Certain Cannabis-related Convictions Act

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Madam Speaker, it is indeed a great pleasure to rise today to debate Bill C-415 by my hon. colleague and friend from Victoria. We both hail from Vancouver Island and I really admire the work he has put into this bill.

It is not very often that one gets to debate a private member's bill in this place that would have such significance in how it would change how we approach criminal law and acknowledge past wrongs. One other private member's bill that I can reference, which I think had a major impact, was Bill S-201, brought in by Senator James Cowan to recognize genetic non-discrimination. The Liberal cabinet was opposed to that bill, but virtually the entire Liberal back bench rose and disagreed with the cabinet and voted in favour of the bill. With the combination of the Liberal back bench, the Conservatives and the New Democrats, we passed that bill and it received royal assent.

I very much implore my Liberal colleagues to look at what this bill attempts to do. I know that some have raised concerns about the bill. They may not think it is perfect, but at second reading stage, we are acknowledging the intent of the bill. I think that if they looked into their hearts, they would find it worthy to be sent to the Standing Committee on Justice and Human Rights, where we could hear from departmental officials and expert witnesses, many of whom the member for Victoria has already quoted. That is where we can look at the language and technical jargon of the bill to see if some of the concerns can be addressed. However, let us at least send this bill to committee. I think this is a very important moment.

Last year, I had the pleasure of giving the NDP's response at second reading to Bill C-45, in my capacity as the justice critic then. I acknowledged that the bill was not perfect and there was a lot of fulsome debate on its merits. My colleague, the member for Vancouver Kingsway said it right, that Bill C-45 did not really legalize cannabis; it just made it less illegal. There are some strict limits that if someone steps outside of, the full weight of the law will still come down on them.

Nevertheless, I think that even my Conservative colleagues can realize that there has been a sea change in public opinion in Canada with regard to cannabis possession. The public has realized that the continued criminalized approach to cannabis possession is wrong. Far too many people suffered under it and, in fact, the continuation of a criminalized approach would actually cause more harm than the use of the drug itself. They have recognized that.

When looking at many of the arguments that Liberal members made in support of Bill C-45, not the least of which was by the Minister of Justice, one of the reasons they cited was that thousands of Canadians end up with criminal records for a non-violent minor cannabis offence each year. I will quote the minister. In her second reading speech on Bill C-45, the Minister of Justice said:

A majority of Canadians no longer believe that simple possession of small amounts of cannabis should be subject to harsh criminal sanctions, which can have lifelong impacts for individuals and take up precious resources in our criminal justice system. Our government agrees that there is a better approach.

I could not agree more with what the Minister of Justice said last year during that second reading debate on this.

There are roughly 500,000 Canadians who have criminal records for cannabis possession. That means that if one were to take a room of 60 people, one person in that room would probably have have a record for cannabis possession. We acknowledge that that has far-reaching consequences. We know that it has affected marginalized and racialized populations disproportionately more than average Caucasian Canadians. That is borne out by the evidence collected in each province and many of our major cities.

Another big issue is that the government came to power with a promise to legalize cannabis. That promise was adopted at the 2012 Liberal policy convention. Therefore, I think that the Canadian public has known for quite some time that this was coming.

As my friend the member for St. Albert—Edmonton said, elections have consequences, and the Liberal government did fulfill that one promise. However, I have an issue with the length of time that it took. We needed the task force to present its report. We then finally had Bill C-45 introduced in April 2017. It received royal assent and came into force only on October 17 of this year. There was plenty of time for the Liberal government to deliberate on the subject and on the consequences that criminal possession has on people's lives. We have this strange binary situation where a person who possessed cannabis on October 16 received a criminal record, but a person who had it on October 17 was perfectly fine.

It is quite amazing what has happened in this country. One can now possess up to 30 grams in public. People can now grow their own plants. Even though there are still very real consequences with the over-consumption of cannabis and whether it is getting into the hands of children, I think we can very much agree that the continued criminal approach to the issue was wrong. It was using up precious resources and it was in no way effectively dealing with the problem.

When we look at the intent of Bill C-415, I very much admire the word “expungement”, because it has an air of permanence about it. It is very much different from a record suspension. As the member for Victoria very clearly laid out, a record suspension is simply setting aside the record. It does not protect the individual in any way from having that reapplied sometime in the future. Indeed, the individual would very much have to prove that he or she is worthy of that happening. However, an expungement allows an individual to truthfully answer the question of whether the individual has a criminal record that he or she does not have one, because expungement makes it as if it never happened in the first place.

We can look at the statistics, specifically with reference to indigenous people in Canada. In Vancouver, indigenous people were seven times more likely than white people to be arrested. In Regina, it was as high as nine times. If we are trying to address a historical wrong, a very real case of social injustice, I think expungement is absolutely the way we should be going.

The Liberals have raised concerns. They have said that they wished to reserve expungement for activities that have been found to be unconstitutional. The parliamentary secretary made reference to Bill C-66, which, absolutely, every member in the House was in support of. However, I have to repeat that the member for Victoria clearly outlined that reserving expungement for activities that have been found to be unconstitutional is simply an arbitrary distinction and has no legal or principled foundation. This is basically a government making up its own rules. I would ask the Liberals to point to any specific case law that underlies their arguments for this, because, trust me, they will not be able to find it.

The Liberals would also like to say that pardoning people will work, because they are going to make pardons free and immediate. I appreciate the fact that the application process will be removed and that the fee will be waived, but right now, the only legislation that actually exists on the books to address this issue, at the end of 2018, three years into the Liberal government's mandate, is Bill C-415 from the member for Victoria.

The Liberals also agree that the process needs to be fair, but they have other doubts about the bill. The bill has been consulted on widely with academics and members of the legal community. I again appeal to my Liberal colleagues to not throw the baby out with the bathwater. If they have difficulties with the technical aspects of this bill, with the language, surely they can understand the intent behind the bill and surely they can find it within their hearts to send the bill to the Standing Committee on Justice and Human Rights where we can make the necessary amendments so that it is reported back to the House in a form they can support.

I look forward to voting on this bill. Again, I congratulate my friend and colleague, the member for Victoria, for bringing in this fantastic piece of legislation.

Justice and Human Rights

[Colin Fraser, Liberal, West Nova, NS]

Madam Speaker, I am pleased to address this issue tonight, but it is not lost on me the passion many feel about this issue. It is a very important issue our House has considered and sent to committee. I want to say first that when I first learned of Bill S-217 and took my time to understand it, in a good faith effort, I knew there were some elements of the bill I did not agree with, but I thought the overall intention of the bill was noble and that the sponsor in the House was bringing it forward for the right reasons. I thank him for doing that.

In the same light of a good faith effort, it was passed at second reading to send to committee so we could study it further, hear from experts, and hear from those who every day deal with the bail system in Canada so we could understand better what impacts and consequences the bill may have that were not apparent, perhaps, at first reading of the bill. I hope that same courtesy will now be extended to those who listened to the testimony at committee and arrived at a different conclusion.

I voted in support of this at second reading, despite concerning elements in the bill, because I wanted to have the opportunity to study it in full. On the same night this was passed at second reading, we also voted on another bill, Bill S-201, the Genetic Non-Discrimination Act. That matter came before committee, and it was concluded by members of all parties to proceed with that bill, because it was good public policy.

The purpose of committee work is to go through a bill in a thoughtful, deliberative manner, listen to experts, have thoughtful discussions, ask good questions, and then come back to the House and make recommendations. That is what we are doing with the bill tonight.

I want to highlight that the essential element of the bill, as I saw it, was, in section 518 of the Criminal Code, changing the permissive “may” to the requirement “shall” lead evidence. That was the essential element. There were other provisions in the bill, however, that I totally disagreed with, because they were not the intention of the bill as I understood it. I appreciated the conversations we had across party lines to realize that the essential element of the bill was changing “may” to “shall”.

How did I approach this bill at committee? I looked at it as an opportunity to shine a light on our bail system in Canada, to understand the essential elements of the bill, and to then, based on the expert testimony, decide whether it was good public policy. One of the thoughts that came to mind throughout the testimony we were hearing was what applies to doctors: do no harm. I thought that was an important way to look at the bill. If we were changing our bail system and how it operates, we should do no harm.

I went in with an open mind and listened to witnesses with different perspectives on the justice system. The experts in the field dealing with bail hearings were the most important to listen to in deciding how we would go forward with this. I went in with an open mind, but I went in with the idea that we must do no harm.

The witnesses offered compelling testimony. I want to highlight, first and foremost, Shelly Wynn. Her testimony was heart wrenching, compelling, believable, and trustworthy, and I extend nothing but thanks to her for her courage in coming to our committee and for all the work she has done in highlighting the issue of bail in Canada.

We also heard from a number of experts. We heard from the Canadian Bar Association, the Ontario Provincial Police, Newfoundland police, Canadian Association of Chiefs of Police, Canadian Association of Crown Counsel, defence lawyers groups, and individuals who have expert opinion to give on our system of bail in Canada.

All of those individuals came to the same conclusion and gave evidence based on the same rationale that this bill would do harm, would actually make our streets less safe, not more safe. The intention of the bill is to, as I understand it, close a loophole in the law to ensure that we are not allowing people out on bail who should be behind bars. The unintended consequences of this bill, however, would have exactly the opposite effect. It would make our streets less safe. It would put people out on the street who should otherwise be behind bars. Do not take my word for it. This was the expert testimony that we heard from police groups, the Canadian Bar Association, the Canadian Association of Crown Counsel, defence lawyers, and individuals who deal with this stuff every day and do not always agree on issues every day.

I want to go now through some of the issues that were raised. The first one is the possibility that this bill, in changing “may” to “shall”, leaving aside all of the other problematic elements in the bill, could have the possibility of raising the burden on the crown. At committee, Rick Woodburn, the president of the Canadian Association of Crown Counsel, stated:

...if you make us prove it, our onus goes up; it doesn't go down. Keeping the individuals you want to keep off the street is harder, not easier.

This is the person who represents Canadian crown prosecutors, who deals with these issues every day.

Superintendent David Truax, the detective superintendent of the Ontario Provincial Police, stated:

Some of the language in the bill obviously proves the fact that...could obviously require the prosecutor to call each and every individual officer to prove each and every individual fact. That obviously would cause strain on policing resources, requiring more...witnesses, more documentation, certified documentation, affidavits, and the like.

Nancy Irving, who was chairing the Alberta committee reviewing the bail system in that province, indicated that the crown burden of proof will be uncertain under years of litigation.

With regard to the issue of delay, I think this was most compelling for me and the most convincing as to why this would be problematic because, in the end, after hearing all of this expert testimony, it was pretty well incontrovertible that there would become mini-trials at bail hearings. This is not a matter of a couple of minutes to get a criminal record. That is not the issue. There are several steps that have to be gone through in a bail hearing, one being the circumstances of the offence being presented to the court. This would cause uncertainty in our bail system. This would cause added resources, added court time, and not a matter of minutes, but delays in bail. People would have to set over bail hearings, perhaps. What would happen in the meantime to those who are supposed to have timely access to bail hearings?

I want to now talk on the issue of delay. Rick Woodburn said the following:

Bail hearings don't take five minutes. They take somewhere between half an hour and two hours, on average. That's for a bail hearing where you just pass information up, hear from a surety, and hear some evidence—about two hours.

If this bill passes, bail hearings will double and triple in time, and it is not necessary.

My colleague across the way just referenced Dr. Cheryl Webster a moment ago in support of his conclusion. He should take her word then when she said the following:

...[it] stuck me...[that it is going to add to court delay with] the higher evidentiary burden.... Any additional time taken during the bail process puts cases even closer to being thrown out for violation of the constitutional right that an accused be tried within a reasonable amount of time.

Professor Anthony Doob stated:

The bill that you have before you will expand the bail process for everyone at a time when...everyone agrees that court delay is a problem.

The Canadian Bar Association echoed the same comments.

I think it is important for us, in a good faith effort in reflecting on this bill, to understand that bail review does need to happen. Our government is committed to doing that. We are committed to working with all sides of the House to make that happen. This bill would not achieve its intended aims.

Criminal Code

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Madam Speaker, the justice committee has been one of the finest committees that I have had the pleasure of sitting on. We have a very good working relationship.

Yes, sometimes the Liberal members on committee will use their way to get their votes, but I have seen other instances, notably with Bill S-201, where Liberal members on the justice committee listened to the evidence and went against cabinet's recommendation. That was one of the finest moments I have ever seen in my short parliamentary career, because the evidence outweighed what the cabinet wanted, and eventually this House got that bill passed and it received royal assent.

I do not want to prejudge what the committee will hear. I intend to do my part on that committee and to work with my colleagues, both the Conservatives and the Liberals, to ensure that any bill that is reported back to the House is one that we can all have faith in.

Ovarian Cancer

[Georgina Jolibois, NDP, Desnethé—Missinippi—Churchill River, SK]

Mr. Speaker, ovarian cancer is the most deadly women's cancer in Canada. Outcomes for ovarian cancer have not changed in 50 years. Treatments have not advanced significantly since the 1990s. Dollars being invested in ovarian cancer research are not enough, causing slow scientific progress compared with other diseases. Immediate investment in ovarian research to help save lives is required, as well as support for ongoing research to screen for ovarian cancer, and implementation of Bill S-201, an act to prohibit and prevent genetic discrimination, to empower Canadian women to use genetic testing.

It is about time we did more for the women living with this disease. Women living with all forms of cancers in my riding have to travel hundreds of kilometres and be separated from their families to get treatment in Saskatoon. We must help Ovarian Cancer Canada and the women it helps by increasing awareness for this cause today, May 8, World Ovarian Cancer Day.

Royal Assent

[The Speaker, Liberal, Geoff Regan]

I have the honour to inform the House that a communication has been received as follows:

Mr. Speaker:

I have the honour to inform you that the Right Honourable David Johnston, Governor General of Canada, signified royal assent by written declaration to the bills listed in the schedule to this letter on the 4th day of May, 2017, at 11:30 a.m.

Yours sincerely,

Stephen Wallace

The schedule indicates that the bills assented to were Bill S-201, an act to prohibit and prevent genetic discrimination, and Bill C-224, an act to amend the Controlled Drugs and Substances Act (assistance — drug overdose).

Now I believe the hon. opposition House leader has the usual Thursday question.

Access to the House of Commons

[Matthew Dubé, NDP, Beloeil—Chambly, QC]

Mr. Speaker, I do not know where my colleague gets the idea that our votes are not free, for I can assure him that they are. I do not understand why he would question the fact that we are mature enough to have robust discussions and then arrive at a certain consensus.

This makes two questions in a row, from two parliamentary secretaries, two representatives of the executive, that have attempted to bring up the Bloc Québécois or the operation of the NDP, even though we are talking about the operation of Parliament.

The example given by the Liberals is interesting. They speak of free votes and say that the Liberal backbenchers have won votes in spite of the government’s position, but when Bill S-201 received the support of Liberal backbenchers, the justice minister referred it to the Supreme Court. Furthermore, the amendments to Bill C-22 that were supported by certain Liberal members on the Standing Committee on Public Safety and National Security are going to be reversed in the House.

It is all well and good, then, to say they have free votes and to congratulate themselves on that, but if the government can do an about-face on issues of fundamental importance such as medical assistance in dying and the committee of parliamentarians that will be overseeing national security agencies, then it is only smoke and mirrors. In any case, with the proposed changes, we may not even have to get up to vote any more. We will have remote voting or something.

I want to bring my Liberal colleagues back to the essential issue. To guarantee us that members’ privilege to represent their fellow citizens is properly defended, we ask for one simple thing: consensus.

Why are they unable to offer us that?

[Tom Kmiec, Conservative, Calgary Shepard, AB]

It's an autumn 1997 Canadian Parliamentary Review. The title is “Obstruction in Ontario and the House of Commons”, by Chris Charlton. It reviews the Ontario legislature and it reviews Parliament, five or six Parliaments, and the work they did on behalf of constituents. I think it is important to use that type of data. One data point is one data point; as I used to tell my staff at both the HR Institute and the chamber of commerce, it is interesting but it doesn't really tell any story. A trend tells you a story, because it can tell you if the rules or procedures or ideas you have are up or down, and whether they are declining or rising. Having multiple data points is how we will get to whether or not we need to change anything.

I haven't seen anything, because there are really no numbers in the government's proposal. There are only areas of study that they proposed—that Mr. Simms moved through his motion—which is why we have moved this amendment.

I want to reference another member of Parliament, Reg Stackhouse, who was a member of Parliament for Scarborough West. This is from a revised submission to the task force on reform of the House of Commons of March 1985. I don't know whether all of his ideas were included in the final report. This is in the Canadian Parliamentary Review, summer 1985, and I have only one point to make from this article:

Debate is the esse of Parliament, and debating is therefore essential to a member's fulfilling his role. The legislator is not intended to be primarily one who gets things done, but one who uses debate to assess, criticize, amend, resist as well as to promote, advocate, motivate and advance ideas.

This is a member of Parliament saying this, so at the end of the day, the result is what you make of it. I know that for the government, the result it is looking for is for its legislative agenda to pass, but we're not here to pass its agenda. We're here to pass Parliament's agenda, and we decide which bills should be taken up. The government can direct us that this bill should be debated today, but it should not be able to tell the committees that it will have six days, nine days, or 10 days, or that Parliament must pass this in 15 days.

That is what we saw with the national energy program when it used time allocation and got it passed within 15 days. What a disaster that was politically for members on the Liberal caucus side. It also had a profound impact on the political culture of Alberta. Up until this very recent election, there were no members of Parliament elected from the Liberal Party of Canada. There are some now, but the impact on the culture and the beliefs and the ethos and the myths surrounding the national energy program are still there. It has had a very profound impact on constituents back home, and on all parliamentarians back home.

I think this is worth reviewing by all members here. It's called “Reforming The House” by Reg Stackhouse, member of Parliament, in the Canadian Parliamentary Review from the summer of 1985.

Now I want to reference an Ontario MPP. I found the most material, surprisingly, from Ontario. It was the easiest to find, I think, because many members have written. A lot of members have also moved on to serve in the Parliament of Canada, so they offer the opportunity to compare the two. This is from Sam L. Cureatz, MPP, who was a member of the Ontario Legislative Assembly for Durham East. He had been deputy speaker since 1981, at the time of this writing in the Canadian Parliamentary Review in the summer of 1983, so he had at least two years as deputy speaker in the Ontario Legislative Assembly, which brings valuable experience. The Speakers are there to enforce the Standing Orders of the House, so obviously they have a better feel for what the Standing Orders mean.

The title of the article is “Some Thoughts on Parliamentary Debate in Ontario”.

In Ontario, when the Minister of Revenue attempted to introduce legislation in connection with the May 1982 provincial budget, a vote on first reading was requested.

I've never seen a vote at first reading in this Parliament. I don't think it would add anything.

The official opposition left the Chamber, and the bells range for two and a half days until their return.

They were calling the members to vote, and the members chose to show their displeasure and unhappiness. They did return eventually, because the opposition also has a certain amount of responsibility. If we just stop coming here and all return to our constituencies, or we sit outside on the lawn of Parliament, I think a great number of Canadians would find that type of activity reprehensible. They would say, “Go back to work. Cobble together a solution”, which is why we're still here at this table trying to find that common ground. That's the point I've been trying to make.

Filibusters or delay is a long-standing democratic practice. Lots of different assemblies use it. It's a common practice, but it has to be used judiciously and wisely. I don't believe we have overreacted and I don't believe we have gone out of our way to obstruct. We are simply trying to make our points.

We come back. Every time, Mr. Chair, that you suspend the meeting and return us, we return. We return to continue the debate. We return to continue making points, and substantive ones as well. I hope I have been substantive in my commentary and that I have made a contribution because I feel that this amendment that we have proposed to the motion is reasonable. It would ensure that all of the opposition members who are here, including my friends in the New Democratic Party, will have an opportunity to be heard.

On these changes to the special orders, the temporary standing orders that could be introduced, our concern is that a report could be produced by June 2 that will be voted on by the majority. We will lose our opportunity to be heard and then, simply, the process will continue and there will be no opportunity for us to get involved.

My last example is actually a Nova Scotia House of Assembly procedural change brought in by the government of John Buchanan, which proposed substantive procedural changes. In 1978 it was a Conservative government. The Liberal official opposition of the day and the New Democratic Party protested, and the government proposed and subsequently set up an all-party working committee to reach consensus. They admitted that they needed to reach consensus.

The government then presented its proposal for these new rules. While these proposals contained only minor modifications of the proposals made by the select committee, they immediately encountered strenuous objection from the Liberal opposition and from the New Democrats. A two-thirds majority was required to enact the new rules, and government supporters in the House were not that numerous. The government therefore decided not to proceed with its resolution. Instead, it proposed to set up an all-party committee to narrow the areas of disagreement.

That's what we're trying to do.

Nova Scotia has an example that we could use. If you pass this amendment, we could narrow down the areas of disagreement. There are things we simply will not agree to. We will not accept to have our voices silenced at committee. We will not accept to have our privileges of debate further restricted. It's not something that we can accept.

The reason they set up this all-party committee, a working committee, and they admit this, was to try to narrow the areas of disagreement. I am sure that during those in camera deliberations or public sessions that they held they found things they simply could not agree on and they removed them. They took them off the table. Perhaps they went through a document like this that was produced upon the advice of the Legislative Assembly of Nova Scotia and they said, “On these three items perhaps we can find agreement, but this one most definitely we cannot” and they simply moved on and found a way around it.

They found a way 35 years ago to reach a solution to the impasse, so why can't we do it here? This is why I'm still speaking to this amendment to the motion because I think we can find agreement and then find a way to work together. I don't think it's unreasonable. This is just an amendment that would protect the opposition from the majority. As many members have said before, this is a protective measure for us to ensure that we are heard, that we do have a role to play here.

On the actual proposals, just so I can make some final points on this, in this document in the introduction.... I've already mentioned my problems about adversarial and my problems about modernization. There is a section that says, “Societal changes have also brought about the need to ensure greater predictability in the House for at least two important reasons”.

There are two important reasons in here to seek more “predictability” in the House. I would substitute “predictability” with the word “efficiency”. I think that's what they mean. One reason is “to ensure Members have a better balance”. It doesn't say “work-life balance”, it just says “better balance”. Another reason is “to encourage under-represented segments of society to seek elected office”. You've heard me talk about this. Nobody reads the Standing Orders before coming here. I think it's a great shock to them how many rules there are.

It says in here as well, “Technological changes should also be considered as we look to ways to make the House more efficient.” Absolutely, and we have had technological changes. We have the ability to look up the Notice Paper, Order Paper, and pieces of legislation online. I read them mostly on an iPad, although I still like the feel of paper, which is why I'm holding this paper. I'm reading from it because I can go back and forth on it, something I can't do very easily on an iPad.

I think those are two bad reasons to go ahead and change the Standing Orders. Those are two very bad reasons to proceed. There would have to be something more substantive than simply saying we need a “better balance”. A better balance of what—between the opposition and the government? You already hold all the cards. You set the agenda. You can use time allocation. You have more members, so you can outvote us. All we ask is for the opportunity to be heard. Don't propose to somehow change the rules without explaining to us where you want to go. As parliamentarians, not as the executive or the cabinet, where do you want to go with these changes?

I would feel far more comfortable if I saw more experienced veteran members, potentially returning members as well—members who were not there in 2011 but who were there before and then returned—providing us their insight and their feedback on the changes being put forward by the government, not by parliamentarians.

Under “Theme 1: Management of the House”, again, you can disagree with me, but I feel that Canadians work five days a week, and some work more than five days a week, so we should too. I know that members say that we work in constituency offices as well, that we travel to our constituencies on weekends and we do substantive work, but constituents expect us to be here and to work on their behalf here. I honestly don't mind if Friday becomes a full day, the way Mr. Simms has proposed, but I also don't believe that 45 days is sufficient time to consider that type of change. I don't want to use the word “radical”. That may be going too far. I need a synonym for it.

This would impact members like you, Mr. Chair, who has to travel to the Yukon. I think you'd be able to spend maybe a few hours at the airport before you had to turn back. It would not achieve the goal it was meant to do.

There may be changes to the House calendar that could be done to offer members more opportunities to have back-to-back weeks in their constituencies. Perhaps we could avoid doing what we've done now, which is that we have one week here, one week off, one week here, one week off. It breaks up the legislative process too much. I still believe it's worthy to have five days, and we should keep it the way it is. Again, that is my personal preference.

In terms of alternating days, sitting days on Fridays, and having more private members' time on Fridays, again, reapportioning hours would not be family friendly in any way. A previous report unanimously agreed not to do away with this. I believe PROC was the one that said not to proceed with changes to Fridays. I could be corrected on that. There are members who sit on the committee on a full-time basis who may have different viewpoints on this.

I mentioned electronic voting before, and my thoughts on this. As I think I mentioned very early this morning, Bill S-201 is a perfect example of when “on division” should have been accepted by the government side, and the cabinet rose to force a recorded vote.

We have a lot of recorded votes. They do serve a purpose. Mr. Simms raised the point that they do serve the purpose of accountability on individual members. I agree with him on that, but I don't think every single measure needs a recorded vote. We have to police ourselves. Is the right number of members five? I don't know. I would say that 25 is not the right number. Let's not get excessive here, but maybe there's a way to change that to something more reasonable. Again, that would have to be considered in a substantive debate, but we can't agree to that debate if you don't approve this amendment. You could change it to 99 or 100, in which case we would not be able to get a recorded vote on our side. I would hope you would not do something so drastic, so radical. I'll use the word “drastic” from now on, not “radical”.

It's mentioned here, under “House Calendar”, that “The number of sittings could be based on the demands to sit.” Who will set and determine who demands to sit? Parliament should determine when it sits. The government should have to bend to the will of Parliament, not the other way around.

I know there is prorogation, which is a method used for.... It's mentioned in here too: “where Governments have prorogued early in the session to avoid politically difficult situations.” It makes a reference to “governments” that have prorogued, but my understanding is that the Governor General prorogues upon the advice of the Prime Minister. Maybe that's just nitpicking but the more we confuse these fine lines between the different functions in the different places, the more we lump it all together so that the executive, the cabinet, the parliamentary secretaries, the government caucus....

People start saying, “You're in the government”. I have constituents who tell me that I'm in the government, “You work for the government”. I reply, “I don't work for the government. I work for you. You pay me indirectly through your taxes, but I am an opposition member.” When I bring greetings to an event I don't say it is on behalf of the Government of Canada. I say it's on behalf of the Parliament of Canada because I am not a member of the government. In schools I go to, I make a point to explain to them that I am not there on behalf of the government; I am there on behalf of Parliament.

It is perhaps not as glorious or as edifying to say that, but it's drawing a line of distinction that we should all be responsible for as parliamentarians who should love this Parliament the way Mr. Diefenbaker did.

Just a little more on prorogation, there are some ideas in here that are worth studying. Some of the reasons for prorogation should perhaps be set out in the Standing Orders, which should perhaps constrain the ability of the executive to seek prorogation, or perhaps there should be debate on it before it happens. I'm sure that could be studied. It could be considered. That could be an entire study on its own, prorogation in Australia and in the Westminster Parliament as well.

Private members' business is where I find the most interest, honestly, because I think there are more opportunities there, as parliamentarians, to do the work we were sent here to do and to actually legislate and to act on behalf of our constituents. If we have more opportunities to propose private member's bills, I think it would be better. I have two private member's motions that I have tabled. I know members who have already passed their private member's bills, but I also know members—Mr. Chan was mentioning it—who may never get the opportunity to table a bill or a motion that could be debated in the House.

It is one of those things members actually look forward to, and it is a question I have heard at the debates I have been to in communities. Many members have told me the same thing. They get asked the question, “What is the first private member's bill you intend to table?” It has become a question the public now asks us: “What is the idea you are running on? What is the one thing you want to do here?” If we could find more opportunities to do that, it would be an interesting idea to pursue.

Our worry is that if you pass this motion the way it is written now, you—the government caucus, the executive, whoever is going to make the final decision—could choose to take away our private members' business time. We have that time on Fridays right now, but we also have extra time on Mondays for it, or you could move it around during the day. We don't know. Maybe there could be Q and A during private members' business for every single speech, which would require more time.

Regarding “Theme 2: Management of Debate”, as I mentioned before in a reference to the House of Representatives, programming was talked about on an experimental basis. It was introduced in 1998 in the United Kingdom. It was made permanent in 2004. It took six years before they made it permanent. They considered for six years whether to keep it or not.

I think we are moving too fast with this. I am sure they did not reach that point without consent, broad-based consent, among the different parties. If we guard our privileges jealously, parliamentarians in the United Kingdom guard them even more jealously. They have brought down prime ministers because they have disagreed with the way a prime minister, an executive, was leading the country. Voters brought down David Cameron's government on a referendum, but it was also a referendum imposed upon him by his backbenchers, who demanded it on behalf of their constituents. Right or wrong, they got what they wanted, and Mr. Cameron eventually resigned after losing what is now called the Brexit referendum.

Those are important points. Members there guard their freedoms jealously, and we should guard ours too against an executive that has gotten larger, more powerful, and more able to offer us incentives and opportunities that we may not have otherwise. I came here to be a parliamentarian, not to be a cabinet minister. Obviously I ran as a Conservative too, so that probably simplifies things as well. I am not working hard to join the cabinet. I am working hard on behalf of my constituents.

If I should find myself on the government caucus side, I would hope I would not be punished with an executive position in cabinet. That would be a punishment for my wife and my family. I think they do extraordinary work, with those extra hours. I don't agree with very many of them and the policy objectives they have, but I respect them. I would hope they would extend the same respect to us, on the opposition side, because we're not here to obstruct without a purpose. We have a purpose, and it's to be part of the proceedings of Parliament. We're trying to maintain that, which is why we've proposed this very reasonable motion.

Don't exclude us. Don't cut us out.

I've said this before, but we just don't have that trust right now. We don't trust you to follow through with that—“you” being the executive and some of the government caucus members who may be active on behalf of or in conjunction with. I don't want to cast aspersions unnecessarily.

Continuing on lower down here, it does mention that “New Zealand and the U.S. House of Representatives also have measures to plan the business of the House that are similar in principle to programming.” I have just shown you, using a congressional procedures book, that the Senate is far more similar to who we are, as parliamentarians here, than who the House of Representatives is when this programming subject is....

I think just this one section here could be its own individual study. It could be its own separate study, but this motion says that you may do this by June 2. That is a quick pace to introduce such a measure as took six years for the United Kingdom Parliament, the mother Parliament, to say it was going to take this on and it was going to accept it.

We don't even know what your goals are at the end. You may produce a report with recommendations that will go to the House, and then you will claim, as Mr. Christopherson said when he was here before, that you have a majority decision from this committee, PROC, saying that we should proceed with the following changes and we, on the opposition side, will obviously disagree and we'll have a debate in the House of Commons that I fear will be just as divisive as the 1991 debates, just as divisive as the 1969 debates, and will not build long-term trust. That is my great fear.

I think the government, when it pushed forward on electoral reform, bent in certain ways and made an agreement with some other opposition parties to have a multi-party committee to consider the issue. In the end, the executive chose not to proceed with electoral reform. I think that was the right call, personally. I know my constituents think that way. I know that, because I surveyed all of them and I got almost 2,000 responses.

I see Madam Mendès also shaking her head. A great number of Canadians got engaged in something that would be considered “inside baseball”. With regard to the Standing Orders, if there is inside baseball, I think we're in the dugout with this stuff. The vast majority of Canadians—

[Tom Kmiec, Conservative, Calgary Shepard, AB]

Because we have Mr. Housefather here and he knows of my great love for Yiddish proverbs, I have this: “Before you utter a word you are the master. After words you are a fool.”

I hope I haven't been a fool so far and that I have made a substantive contribution to the debate with the research I have used to demonstrate that we do have an opportunity to find common ground and to have the amendment to the motion pass. It's based on a substantive reasoning that we should do it where we unanimously agree on changes to the Standing Orders as they may come.

Now what I want to do is refer to an article that deals with time allocation in the House of Commons, “Silencing Parliamentary Democracy or Effective Time Management? Time Allocation in the House of Commons”, which I think is to the point of efficiency that's in the government's “Reforming the Standing Orders of the House of Commons” document. Efficiency keeps being brought up in this document as the reason for the motion Mr. Simms tabled and the amendment that was thereafter moved.

This article is written by Yves Yvon J. Pelletier, who was a parliamentary intern from 1999 to 2000. It's based on his research essay, which was awarded the Alf Hales prize as the best paper submitted by the 1999-2000 interns. I have gone through this article, and I made a few notes to myself, because it deals substantively with what we are dealing with here today, which is the role of members of Parliament and the Standing Orders of the House and how they enable us to have the rights and privileges we enjoy to do the work of parliamentarians.

Our privileges as members don't come from the Standing Orders. The Standing Orders don't grant us those privileges. We have those from our traditions and our customs. Some of them are written into statute, and some of them simply are practice. As I mentioned before, we come to learn about them mostly from the more experienced members of Parliament, who tell us about decorum in the House, whether or not we can wear ties in the House, and when we can be recognized to speak by the Speaker or the person in the Speaker's chair.

In this article, he mentions that the changes to the Standing Orders of the House of Commons have limited the opportunities of private members to influence the final wording of government bills. This has happened over time. Successive parliamentary procedural changes have made it a priority of the government and of the majority of the members. They have limited the ability of private members to influence the final wording of government bills. That has given the government some certainty about what the final product will look like once it goes to the Senate.

There has always been a need to balance the right to speak for an appropriate length of time and Parliament's right to reach decisions. It's Parliament's right to reach a decision, not the government's right to reach a decision. Government should have no expectation that there is an end date to the debate. Only once each member has spoken in the House, if he or she chooses to speak on a particular amendment or subamendment or piece of legislation, could we then say that Parliament has reached a point of making a decision. We know this. The Speaker rises, goes through the yeas and nays, and then we have the request: is it on division?

Maybe I'll segue just for a moment. “On division”, the two most beautiful words in parliamentary procedure, which we should use much more often than we do right now, are when we stand by for a recorded vote. On division at committee is the reason we're able to process amendments so much faster than we would if we had recorded votes for everything. On division is the reason we are able to go through a witness list at committee so much faster than if we went through a recorded vote. You could request a recorded vote on all those things and grind a committee to a halt. Sometimes the opposition may do that, if none of their witnesses have been accepted, in which case there is a valid reason to obstruct a committee solely to prove a point that you should compromise, co-operate, and at least show good faith toward the other political caucus at the table to reach a compromise and move forward.

You can build trust over time, or you might find situations where persons at the table are willing to forgo a particular witness or an amendment or whatever reason they have found for obstructing. “On division” are the two most beautiful words in parliamentary language.

I'll mention, too, as part of this segue, Bill S-201, the anti-discrimination bill. I was mentioning this to Mr. Graham. When the votes happen, we all get to count the votes and see who voted how, and it's part of the pageantry of the House. After having lost two votes, the executive members—the executive council, the cabinet ministers—rose to request a recorded vote after it was plainly evident that they had lost the voice vote. I was scratching my head the first time they did it, because I didn't quite understand the political reasoning for doing it. When they did it a second time, I thought to myself that I must have dozed off and missed something, because it was very confusing. They consumed another 10 minutes of time in the House, when there was no need for it.

This is about policing ourselves. The efficiency of the House was not hurt by parliamentarians. It was actually hurt by the executive. We could have been more efficient in managing our time if the executive team, the parliamentarians who also serve on the executive council or are members of the cabinet, had simply not risen and had accepted it “on division”, those two beautiful words.

We could pass, perhaps, this amendment to the main motion on division, and it would be beautiful, as long as it was accepted and passed on the yea side, not on the negative side.

I wanted to mention that the right to reach a decision is a right of Parliament, not the right of the government. They should never expect that Parliament will pass their legislation in the shape or form that they present it and table it before the House.

Now, the legislative role of MPs has declined as a result of time allocation. We know this. We've all experienced it. We've complained about it. A certain political party and caucus on the other side made a lot of hay out of it politically, and it was very successful for them.

When I reach the end of these notes, you'll realize I'll mention the government of Prime Minister Chrétien and will compare it to Mr. Mulroney's when time allocation was used, and it won't be as positive comparison for the members of the government caucus.

Prime ministers take advantage of the loyalty and inexperience of their members. I make this as an opinion statement, but it's also repeated in this article, which goes on to say that prime ministers use “...persuasion skills to limit, if not silence, their opposition to government measures on the public stage.”

Although I can see in the government caucus there are a lot of independent thinkers, which I appreciate very much, I hope they see on our side a lot of independent thinkers as well.

I voted with you, Mr. Chair, on your private member's bill, which I thought was an excellent idea. I know we had a side conversation about it. I was in the minority in my party. I was happy to do that because the idea, the policy goal, was the right one. That's what I thought at the time, and I expressed to my caucus colleagues and to my supporters that I would be doing that.

The Prime Minister and the executive team have a lot of tools they can use in order to limit the ability of the government caucus to express itself.

Maybe this is a good time to mention the free votes concept. We've all heard about free votes, that we should have more free votes. I have a lot of constituents come to me and tell me we should have more free votes.

We have free votes. Every vote is free, even the ones at committee, but all votes have consequences.

[Tom Kmiec, Conservative, Calgary Shepard, AB]

Thank you, Mr. Chair.

I'll continue from where I left off.

I'll start by reviewing certain comments made by members during the debates held in the House on October 6, 2016.

I also want to mention that, at the end, I'll talk about another article published in the Canadian Parliamentary Review. The article describes the events that occurred at the Legislative Assembly of Ontario in the 1990s, in other words, the obstruction from the opposition. It's a perfect example of the situation at that time.

I'm first going to continue with the debate that happened on October 6, because, again, there is a reference to it in the motion. I think we would greatly assist the committee if we were to pass the very reasonable amendment that we've proposed in order to be able to follow through with and study some of the ideas that have been discussed by other members of Parliament before us—for instance, electronic voting.

Mr. Chair, you mentioned “electronic voting” during the debate. I'm looking at page 5557 of Hansard for that day. There's a brief discussion there about how we could have buttons on our desks that would speed up the vote, especially when we have successive votes to do, but those often happen because we're having a recorded vote.

At the very beginning, maybe a few hours ago, you heard me mention Bill S-201, the genetic discrimination bill, when members of the cabinet rose to have a recorded vote after they lost the prior vote that I believe indicated the will of the House to pass the bill. We could have done it “on division”—those two most beautiful words in parliamentary history. They are historic words. Saying “on division” speeds up the process. If we police ourselves, we don't need electronic voting, whether we're voting on a BlackBerry or an iPad, or with switches or dials or with ballots cast. If we police ourselves and ask for a recorded vote only when we absolutely must, I believe we could gain from it.

It's happened at committees too. Committees I have been on have done things on division, and not just for committee reports, but when there's a disagreement that's profound and the two sides can't agree, and they choose not to go with a recorded vote. I think I have asked for one recorded vote at a committee, only once in all my time serving on them. Every single other time, we just agreed to disagree. We can agree to disagree without being disagreeable. I think many committees succeed in doing that.

On electronic voting, I would hope that whatever the committee may or may not study in the future will balance the speed of voting with the understanding what we're voting on. I know that it's sometimes a challenge in the House to hear what the Speaker is saying or to fully understand exactly the motion that we've been called to the House to vote on.

For some of the motions or bills, we know ahead of time, because we get our notices and it's easy to plan around them; they're on pieces of legislation at different stages that we're moving on to committee or there's a vote at report stage. It's a fairly simple exercise to understand what we're voting on. At times, especially on estimates or business of supply votes, it can be difficult to hear. The difference between Bill C-40 and Bill C-41 is minute, and the speakers do have to read through them quite quickly. You could miss it.

If consideration is given to electronic voting—I know the government's proposal and the discussion paper's very brief mentions of it don't have very many details—I would hope that we don't just look at speeding up voting in the name of efficiency while taking away the ability of members of Parliament to fully understand how they're voting.

I think the changes that have been introduced in the past in order to vote from the backbench to the front are good. They are positive changes. I think very many of us, then, can look at our colleagues around us regarding how they vote. I know that I talk to my colleagues before deciding on how I will vote, and when I choose not to vote with my party and my caucus, I let them know. They know how I'm going to vote, because I inform them ahead of time.

I'm sure that in the government caucus the members opposite me right now do the same thing.

You have discussions, you talk amongst yourselves, and you inform those who you need to inform. “No surprises” is almost a slogan here in Parliament, but I think it applies to all of us. We don't want to surprise our colleagues. We want them to know how we're going to vote. It shouldn't be much of a secret. When people ask me how I'm going to vote on a particular motion or bill, typically I tell them exactly what I'm thinking, how I am going to vote—yes or no—and I have no problems in conveying that, but I have to know what I'm voting on. Sometimes there are last-minute amendments proposed or report stage amendments that I would like to be able to read more carefully.

I'm not opposed to electronic voting, but what does electronic voting mean in this context? I do have potential issues with it.

Another comment that arose, and this is from Mr. Dubé, the member for Beloeil—Chambly, was this:

This is certainly something that we should include now officially in the Standing Orders, barring certain exceptions that can come up. It is something that we can easily formalize and seems to be something that already, despite being relatively informal and based on the motions that we have to adopt every single time through unanimous consent, has that consent. Why not make it formal and avoid having to do it every time?

He was talking in this context about the personal situations, the gruelling schedules we all have to go through. The votes being moved to after question period I think is a good change. It's done by agreement. It's not in the Standing Orders. It's simply that we have agreed, as a group of people doing work on behalf of our constituents, to have the votes scheduled at a more convenient time. We're still going to vote, but just at a more convenient time.

I also think that one of the things that Parliament could look at and this committee could really look at is studying all the unanimous consent motions that have come through in recent history. You can get staff to do that. I don't mean for all of us to start going through the pages of Hansard. We would be looking at what was the most common unanimous consent motion and potentially—

Pardon?

National Security and Intelligence Committee of Parliamentarians Act

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Mr. Speaker, it is a great honour to rise today to take part in this very important debate on Bill C-22.

I feel honoured to give voice to the serious concerns that many of my constituents have in the great riding of Cowichan—Malahat—Langford. I also want to note that this debate is taking place under the yoke of time allocation. In other words, the ability of parliamentarians to provide oversight on a bill dealing with oversight has now been curtailed by the government.

Bill C-22 cannot be debated without being properly placed in the context of Bill C-51 from the 41st Parliament. Bill C-51 was one of the most draconian pieces of security legislation to emanate from the previous Conservative government. Indeed, more than 100 of Canada's brightest legal experts from institutions across the country sent an open letter to all members of Parliament at the time, expressing their deep concern about Bill C-51. They called that bill a dangerous piece of legislation, in terms of the potential impacts on the rule of law, on constitutionally and internationally protected rights, and on the health of Canada's democracy.

We had former prime ministers, former justices of the Supreme Court of Canada, and all sorts of experts who gave close scrutiny to Bill C-51 and were convinced it was unconstitutional. Many of my constituents were very vocally opposed to Bill C-51, and indeed many of them took part in the protests that erupted across Canada during that time.

It was a sad day in Parliament when the Liberals joined with the Conservatives to pass that bill. I think, and many of my colleagues will agree with me, that on Bill C-51, the Liberals were indecisive, unreliable, and plain wrong to support it at the time. I do not think they realized how much of a serious misjudgement they had made with the Canadian public on the mood of Canadians.

Then, when we edged closer to the 2015 election, we suddenly saw a commitment in the Liberal campaign platform to introduce new legislation that would balance collective security with our rights and freedoms. Part of that promise was to establish an all-party national oversight committee, which we see today in Bill C-22.

In our system today, we have a history of having opposition chairs in oversight committees. Committees on ethics, public accounts, status of women, and government operations all have elected opposition chairs to ensure proper accountability and oversight. It is most unfortunate that the government, through clause 6 of the bill, has provided for the Governor in Council to designate the chair of the committee. In fact, the government has not even bothered to wait for the passage of this bill, because, as we all know, it has been widely reported that the member for Ottawa South is to be the chair. The government has also rejected attempts at the committee stage to allow for the committee to elect its chair, something which I think is unfortunate.

If I could deliver one message today, it is that Canadians expect to have a watchdog and oversight committee that has real teeth. I think this committee must have full access to classified information, have adequate resources, and, most importantly, it must have independence subject only to justifiable limits and the power to share its findings with Canadians in an informative and transparent manner.

Without adequate access to information, the committee will not be able to do its job effectively. I think this work is far too important to do half-heartedly or ineffectively. I will not support creating a committee that cannot properly provide oversight in accordance with what Canadians expect.

One of the government's proposals is to allow cabinet ministers to withhold information from the oversight committee. This is evident in Motion No. 5, which the government has presented, which seeks to reinstate clause 16. It is worded in a way that allows a minister to withhold information if he or she feels that it is special operational information or that the provision of the information would be injurious to national security.

If injurious to national security is not a blanket statement to cover any kind of reason, I do not know what is. I have heard Liberal MPs say that there is a proper accountability in oversight because the minister simply has to inform the committee of his or her decision and the reasons for it, as if that somehow makes everything okay.

I cannot support such a reinstatement of that clause. The public safety committee and the experts who were heard made it very clear that the the executive branch having this kind of power over an oversight committee simply will not fly. It would make the committee completely ineffective anytime that a minister wanted to withhold information. With regard to the way that the government wants to write the bill, the minister could claim that a confidential inquiry somehow jeopardizes the country's national security. I think that giving the government the ability to shut down any kind of investigation into its actions is too dangerous for a functioning and accountable democracy.

The other thing is that we need to build Canadians' trust in our security and intelligence community, and the way to do that is to create meaningful parliamentary oversight. We need to have a fully briefed parliamentary oversight committee that can issue authoritative reports to Canadians. Without full access and full trust from the agencies, the oversight committee cannot help those agencies earn the trust of Canadians. It is very disappointing and frustrating that the Liberals are not living up to the commitments they made trying to fix Bill C-51. To rebuild this trust, the committee must be strong, independent, and effective. The Liberals must fulfill their promise to “repeal the problematic elements of Bill C-51”.

I find it very troubling that the government cannot seem to place its trust in a select group of parliamentarians who will be security cleared, sworn to secrecy, and who will have waived all immunity based on parliamentary privilege. To underline how ridiculous this premise is, I would like to point out that there are members of the Conservative Party in opposition who were once members of cabinet in the previous Parliament. At that time, they had access to all kinds of sensitive information and are still bound by secrecy. Why the government will not now trust this committee to have full access and provide proper oversight remains an elusive mystery.

All parties worked hard during the committee process to improve Bill C-22. The final product, as was reported back to this House, was praised by four of Canada's leading authorities on intelligence and oversight issues. They wrote a joint op-ed in The Globe and Mail, calling on the government to accept the improvements and pass the bill. The last-minute changes that the government is now trying to make are unsupported by evidence heard at the committee, and they would undermine the effectiveness of the committee and the trust of Canadians. The Information Commissioner and the Privacy Commissioner of Canada, Kent Roach and Craig Forcese, the first chair of the Security Intelligence Review Committee, and a representative of the Canadian Bar Association, all testified that the oversight committee should not be restricted in its access to necessary information. I do not understand why the government is attempting to reject that expert evidence.

There are three core agencies responsible for security and intelligence work in Canada: CSIS, CSE, and the RCMP. They have a combined budget of approaching $4 billion, and they employ close to 34,000 people. Clearly such a vast network needs to have the accountability and oversight of Parliament in order to regain Canadians' trust. The role of Parliament is to scrutinize the government, represent the Canadian people, and bring forth good laws to govern our people.

I call on the Liberal MPs sitting in the back rows to go back to that special day on March 8 during the vote on Bill S-201, when they had the courage to stand up and assert their power as legislators in the face of the opposition from cabinet. As they did then, those Liberal MPs should reject the government's 11th-hour amendments to this bill, and instead listen to the evidence that was so clearly presented to the Standing Committee on Public Safety and National Security. I ask all MPs in this House to remember that the government is accountable to Parliament, not the other way around.

[Luc Berthold, Conservative, Mégantic—L'Érable, QC]

Mr. Speaker, I thank my colleague very much for his presentation.

I also thank my colleague, the hon. member for Parry Sound—Muskoka, the official opposition critic for public safety, for his outstanding work on this very important issue.

I was prepared to speak to Bill C-22 in a perfectly normal debate in keeping with the standard procedures of the House. Unfortunately, today, we have all once again witnessed, as we have on a number of occasions, the government's willingness to shorten debate so that all those who have things to say on Bill C-22 cannot do so.

This is surprising in the case of a bill sponsored by the Minister of Public Safety and Emergency Preparedness. The minister has previously had a very different view of the contribution of parliamentarians here in the House, if we go by a short article from 2013 on the website of the minister, who was then a member of Parliament. I will quote two short excerpts in English; it will be easier.

The piece is entitled Ideas For Making Our Democracy Stronger, and the paragraph that caught my attention reads as follows:

Ministers wanting to advance policy initiatives should be required to convince not only cabinet colleagues, but also backbenchers. They should not simply rely on the Whip to enforce support–they should earn it by merit.

However, what we are seeing today is quite the opposite. Not only is the whip being used, but so is the Leader of the Government in the House to move Bill C-22 quickly through all stages in the House.

In the same piece, when the Minister of Public Safety and Emergency Preparedness was a member of Parliament, he says:

Restrictions are needed on the use of ancient but recently-abused Parliamentary tools such as Omnibus Bills, Closure Motions to terminate debates, and Prorogation. They have their place, but should be confined to their original purpose and intent.

Once again, what we are seeing today is completely the opposite. Those are the very words of the minister who is sponsoring Bill C-22.

Bill C-22 was introduced in the House of Commons last June 16, in order to establish the National Security and Intelligence Committee of Parliamentarians. Let us recall that the establishment of a parliamentary oversight committee was a promise made by the Liberals. Clearly, it is important to make sure that our national security bodies are properly examined. We must absolutely ensure that this committee has the tools it needs to do its work.

However, we know that the Prime Minister has already appointed a member of his caucus, the member for Ottawa South, as chair of that committee, even though the legislation has not yet passed. A gag was used today. A committee chair was appointed. There is no legislation in place, but we already know the name of the chair of a committee that does not exist.

The government is breaking a well-established tradition of our parliamentary system by imposing a chair the way it did. Committee chairs have always been elected by the committees themselves, not imposed by the Prime Minister's Office. The Liberals promised Canadians during the election campaign that they would form a committee of parliamentarians on national security. They said, promised and repeated that this committee would be non-partisan. Bill C-22 does not create a committee of parliamentarians. It is not neutral nor is it non-partisan. It is controlled by the Prime Minister and the Minister of Public Safety and Emergency Preparedness.

We have to realize that the Liberal government is much better at making speeches and symbolic gestures than it is at taking real action. However, in finest federal Liberal tradition, they promise one thing in a campaign and do the opposite once ensconced on the government benches. This is called being partisan. It reeks of partisanship.

Bill C-22 imposes many barriers on the committee's ability to access information or call witnesses. This, also, is unlike similar committees that operate effectively in allied countries, such as the United Kingdom. The official opposition presented motions to amend Bill C-22 to the Standing Committee on Public Safety and National Security in December.

On the issue of a non-partisan committee, we would expect some of the opposition's recommendations to be accepted, but all of the official opposition's proposed amendments were rejected. We only wanted to ensure that the composition of the committee is not partisan and that its chair and its members are not appointed by the Prime Minister.

Clearly, as we now know, that recommendation was not accepted. The committee should be established by Parliament and be accountable to Parliament, not just to the Prime Minister and the Minister of Public Safety. However, the Liberal government is not listening.

We also wanted to remove the many blocking mechanisms in Bill C-22 that limit the committee's access to information and power to call witnesses. Once again, the Liberal government has said no. We wanted to ensure the committee's annual reporting process to Parliament will be more transparent. The Liberal government has decided otherwise. This is what sunny ways look like. This government is becoming a master in the art breaking promises.

The Liberals promised a modest deficit. If we were to give them a report card today, they would get a failing grade. The same goes for electoral reform. The Minister of Public Safety even talks about this in the fascinating piece I just read from. I quoted a few passages, but I will refrain from quoting it any further. I will have other opportunities to do so. The issue of electoral reform was a monumental failure, even though the Liberals spent hundreds of thousands of dollars consulting Canadians. They ignored the results of those consultations. They simply went ahead and did what they wanted anyway.

There is no denying that the Prime Minister's sunny ways have also failed when it comes to transparency and accountability. If I were a teacher, I would be forced to write “fail” in big red letters on this government's report card.

On September 30, 2016, which was not so long ago, the Liberal member for Willowdale stated the following in this House:

In keeping with our government's commitment to evidence-based decision-making, Bill C-22 notably aligns Canada's security regime with accepted international best practices. As colleagues before me have highlighted, Canada is currently the only member of the Five Eyes alliance lacking a security oversight committee that grants sitting legislators access to confidential national security information.

Many of my colleagues have demonstrated in the House that the government has failed to do this. It has not kept its promise to align this committee with the best practices of our allies, including Great Britain. Will the member for Willowdale vote against the wishes of the Prime Minister's Office and honour the promise he solemnly made to his own constituents?

On September 28, 2016, the member for Montarville, who is now on the back benches but was then parliamentary secretary to the Minister of Public Safety, said the following in the House:

The bill before us would establish a committee with nine members. Seven of the committee members would be drawn from the House of Commons, and of these seven, only four can be government members. Two members would be drawn from the other place. This committee will be different from other committees and offices established to review security and intelligence matters.

A little further on in his speech, which was probably prepared by officials from the Department of Public Safety and Emergency Preparedness and edited by the Prime Minister's Office, he added:

Robust powers are given to this committee, its members, and its secretariat. The committee will be able to access any information it needs to conduct its reviews, subject to some specific and reasonable limits.

The powers conferred upon the executive, meaning the ministers of the Liberal government, are huge. For instance, subclause 8(2) of the bill states:

If the appropriate Minister determines that a review would be injurious to national security, he or she must inform the Committee of his or her determination and the reasons for it.

In language that everyone can understand, that means that a minister can decide what the committee will study. I am not sure that that is what voters voted for on October 19, 2015.

In conclusion, I invite my Liberal colleagues and all members to assert their independence with respect to the Prime Minister's cabinet and his staff. They already did so in the not too distant past when voting on Bill S-201. I believe that the members opposite are capable of doing it again if they can muster the courage.

I invite them to vote against Bill C-22 and not to renege on the promise they made to their respective constituents in the last election campaign.

Genetic Non-Discrimination Act

[The Speaker, Liberal, Geoff Regan]

The House will now proceed to the taking of the deferred recorded division on the motion at report stage of Bill S-201 under private members' business.

The question is on Motion No. 1. A vote on this motion also applies to Motions Nos. 2 to 8.

The House resumed from March 7 consideration of Bill S-201, An Act to prohibit and prevent genetic discrimination, as reported (with amendment) from the committee, and of the motions in Group No. 1.

[Pam Damoff, Liberal, Oakville North—Burlington, ON]

Mr. Speaker, it is an honour to speak today in support of Bill S-201, the genetic non-discrimination act. I applaud Senator Cowan for his efforts for many years on this issue and my colleague, the member for Don Valley West, who has been a tireless advocate to end genetic discrimination.

With this bill, we have the historic opportunity to join all other G7 countries that already have legislation that protects its citizens from discrimination based on their genetics.

As we have heard, the bill has three components, each of which is critical to the new genetic non-discrimination bill, which would make it a criminal offence for a service provider to require genetic testing or that a person disclose results of past testing. The second part would amend the Canada Labour Code to set up a complaint procedure for those working in federally regulated industries. Finally, it would amend the Canadian Human Rights Act to add the words “genetic discrimination”.

The proposed amendments would remove two of these three components of the bill and could leave more 90% of Canadians with a false sense of security that they are indeed protected. As we know, only 5% to 7% of Canadians are covered by the Canadian Human Rights Act, so most would still remain without protections with the government's proposed amendments.

My colleague from Don Valley West shared a timeline that highlights the rapid changes taking place in genetic testing. In 2003, scientists first mapped the human genome. Then there were 100 genetic tests for diseases or conditions. When Senator Cowan first spoke about this issue in the Senate 10 years later, the number of tests had jumped to 2,000. Today that number has skyrocketed to almost 35,000, with tests available for more than 10,000 conditions.

The Canadian Coalition for Genetic Fairness is a group of 18 organizations dedicated to establishing protections from genetic discrimination for all Canadians. Members include the ALS Society of Canada, the Alzheimer Society of Canada, Muscular Dystrophy Canada, the MS Society of Canada, Osteoporosis Canada, and 13 more. They have stated that cases of genetic discrimination have been documented in Canada and are continuing to grow. As they remind us, all Canadians are impacted by genetic discrimination. Each of us has dozens of genetic mutations that could increase or decrease our risk of getting diseases such as diabetes, heart disease, cancer, Parkinson's, or Alzheimer's disease.

While I was aware that genetic testing was available, like most Canadians I had not given it a lot of thought. While I knew that my father's colon cancer made it more likely for me to develop the same cancer, there was not a genetic test available for that particular cancer. I knew about the BRCA gene and its connection to breast and ovarian cancer, but it was not until last year, when I had a meeting with Ovarian Cancer Canada, that I was shocked to learn of the discrimination that is taking place in our country based on genetics.

Ovarian cancer is an insidious disease that is notoriously hard to detect. There is no reliable early detection test. It is the third most common reproductive cancer in women and one of the most deadly. I was told the story of two sisters who had a history of ovarian cancer in their family. Their doctors recommended genetic testing, as their prognosis would greatly improve with the knowledge gained from these tests. One sister had the testing, was positive for the gene, and had surgery to remove her ovaries. The other sister was told her insurance would be cancelled if she tested positive, so despite the fact that the test could potentially save her life, she was afraid to risk losing her insurance and did not get genetic testing.

Just last night, I received a letter from a constituent who wished to stay anonymous out of fear of discrimination. She disclosed that she and her daughter had a genetic test that found that they both had a gene that could leave them blind. She questioned the fairness of allowing a simple genetic test to undermine her future access to employment and insurance, and she worried about her daughter and the effect it could have on her career and future. She reminded me that we live in Canada, a country where we celebrate our differences. We protect one another from race, colour, sex, and disability discrimination.

In an article posted yesterday, representatives from Ovarian Cancer Canada and the Centre for Israel and Jewish Affairs wrote:

For a young woman taking her first steps in building a professional career, the “wrong” genetic test results can impose a new glass ceiling....

Tomorrow is International Women's Day, and members of this House will have an opportunity to enhance women's health by allowing them to use genetic testing for early detection, monitoring, and intervention without the fear of being discriminated against.

Last year I had the opportunity to speak with Rabbi Stephen Wise from the Shaarei-Beth El congregation in Oakville. He shared with me the prevalence of certain genetic diseases within the Jewish community. He said that Bill S-201 would save lives. In fact, the Centre for Israel and Jewish Affairs, a member of the Canadian Coalition for Genetic Fairness, which appeared as a witness before the justice committee, stated, “It is time for the law to catch up with science and bring an end to genetic discrimination”. On its website, it highlights that governments continue to invest billions in promising genome research, but the benefits of this research will be diminished or degraded due to genetic discrimination.

A Globe and Mail story from last year told the story of a 24 year old who was fired from his first job of his career when he told his employer he had tested positive for the gene for Huntington's disease. Our human rights laws do not cover this type of discrimination yet. Bill S-201 would change that. This is one of the many reasons why the bill should pass as is, without amendment. As it is currently written, the bill would make this type of dismissal criminal and allow individuals to make their case through the less cumbersome judicial process.

Constitutional law experts have stated that the bill would be constitutionally valid because it did not single out a particular industry that fell under provincial jurisdiction.

This issue has been debated in the House of Commons and the Senate. The issue of genetic screening has been mentioned in both the Liberal and Conservative Party platforms, and the NDP recently had a private member's bill to ban “genetic characteristics” as grounds for discrimination under the Canadian Human Rights Act.

I suspect most Canadians would be shocked that their genetic test results could be used to discriminate in employment, insurance, and even divorce cases. Often it is not until people are advised to get genetic testing that they find out about this discrimination. The fear of the disclosure is actually preventing people from getting tested. This is just wrong.

Genetic testing is transforming medicine by moving medical research toward personalized medicine. Modern medicine is recognizing that mapping the human gene for diseases and conditions can truly change the way we treat individuals.

When Dr. Cindy Forbes, past president of the Canadian Medical Association, appeared before the justice committee, she stated the CMA's strong support for Bill S-201 in its entirety. She spoke to the rapid growth of genetic testing and the great promise it held in the diagnosis and therapeutic treatment of many known and new diseases. She said this would ultimately enhance the quality of life of many patients and allow for early diagnoses that would benefit patient care. She testified that genomic medicine was a transformative development.

She also stated:

Of great concern to Canada's doctors and their patients is the fact that public policies and legislation have not kept pace with this transformation. Genetic discrimination is both a significant and an internationally recognized phenomenon...As Canada's doctors, it is the CMA's position that Canadians deserve to have access to the best possible health care without fear of genetic discrimination.

She testified to the correlation between disease and genetics, stating:

Six out of every 10 Canadians will be affected during their lifetime by a health problem that is genetic in whole or in part. It's important to recognize that genetic testing will no longer be limited to rare, esoteric genetic diseases occurring in patients seen by a handful of specialists across the country. Rather, it's becoming an integral part of broad medical care and, as such, is expected to become mainstream medicine.

As legislators, it is imperative that we deal with this issue now and give those who undergo genetic testing the protection they deserve. Bill S-201, if passed as originally written without amendments, will bring our laws in line with other G7 countries. This law is long overdue. It will protect our citizens. It is the right thing to do.

[Don Davies, NDP, Vancouver Kingsway, BC]

Mr. Speaker, I rise today to express my profound disappointment with the Liberal government's decision to gut legislation intended to protect Canadians from genetic discrimination.

Such legislation is essential to ensure that Canadians can make use of genetic testing, without fear, to improve their health care planning and treatment options. With approximately 48,000 genetic tests now available, no Canadian should have to forgo using these critical tools because they lacked effective legal protection from discrimination. That is exactly what the Liberal government has decided Canadians will have to suffer.

The original version of Bill S-201 proposed to make amendments to the Canada Labour Code and the Canadian Human Rights Act, while introducing a series of new offences and penalties for genetic discrimination in a stand-alone act and to prevent discrimination in contracts in the provision of goods and services. However, the Liberal government's amendments to Bill S-201 have deleted all provisions forbidding mandatory genetic testing and mandatory disclosure of test results, as well as proposed employee protections under the Canada Labour Code. The only provision remaining from the original version of Bill S-201 would make genetic characteristics a discriminatory motive under the Canadian Human Rights Act.

Currently, there is no law in place that protects the genetic privacy of Canadians. This puts Canada out of step with its major industrial counterparts. By eviscerating Bill S-201, the Liberal government is maintaining a serious legislative gap on genetic discrimination that does not exist in any of our G7 partners.

Canada's New Democrats agree that the federal government can, and must, do more to provide comprehensive protection from genetic discrimination for every Canadian. That is why we strongly supported Bill S-201 when it was first introduced in the House. That is why New Democratic MPs introduced similar legislation on three previous occasions.

Simply put, the Liberal government has utterly neutered Bill S-201 and, more important, the rights of all Canadians by eliminating the first ever nationwide protections and penalties against genetic discrimination.

Let us take a closer look at exactly what the Liberal government is proposing to do to the bill.

The original version of Bill S-201 would have enacted a new statute, the genetic non-discrimination act, prohibiting any requirement that would force an individual to take a genetic test or disclose the results of a genetic test. Further, it would have prohibited anyone from collecting or using the results of a person's genetic test without the person's written consent as a condition of providing goods or services to the person, entering into or continuing a contract with the person or offering or continuing particular terms or conditions in a contract with the person. Researchers and practitioners providing health services would have been exempt from this aspect of the legislation.

The original version of Bill S-201 would have made changes to the Canada Labour Code to prohibit federally regulated employers from taking disciplinary action against an employee because the employee refused the employer's request to take a genetic test or reveal the results of a previous test. The original bill would have also amended federal privacy legislation to make it clear that “personal information” would include information derived from genetic testing. Breaking the law would have been a criminal offence, punishable by fines and imprisonment.

In other words, the original bill would have provided Canadians with protection against discrimination on the basis of their genetic makeup. It would have protected Canadians from being forced to disclose genetic information to insurance companies and their employers. However, the Liberal government has stripped those protections from the bill.

In doing so, it is important to note that the Liberals are ignoring, indeed, countermanding, the overwhelming weight of testimony at both the House Standing Committee on Justice and Human Rights and the Senate Standing Committee on Human Rights. Before both bodies, the vast majority of witnesses supported the legislation as originally proposed. This view was echoed by the Canadian Coalition for Genetic Fairness, a diverse alliance of organizations that advocate on behalf of the families directly affected by genetic conditions, folks who are witnessing the disturbing prevalence of genetic discrimination first hand.

As stated, the only provision that the Liberal government has chosen to maintain is to amend the Canadian Human Rights Act to include genetic characteristics as a prohibited ground of discrimination.

Unfortunately, this provision is arguably the weakest of the protections contained in the original text of the bill. As Marie-Claude Landry, the chief commissioner of the Canadian Human Rights Commission told the justice committee:

While changing the Canadian Human Rights Act will be a positive step for human rights, it cannot address all the concerns surrounding genetic discrimination.... There will still be a clear need to address the very real and the very serious fears of discrimination raised during the Senate debate..., fears about test results being used against us and fears for our children. We believe that in order to properly address these concerns it is going to take a concerted [comprehensive] national approach.

This is deeply disappointing to all those who believe in rights. It will create fear that Canadians will not qualify for insurance coverage. It will compel employees to provide their employers or prospective employers with personal information that may then be used to deny them employment. Worse, it will cause Canadians to decline to get tested for many conditions, to avoid creating a record that may some day be used against them. This will harm Canadians' health and set back critical treatment and research into many genetically influenced diseases.

These concerns have been eloquently captured by David Loukidelis, Q.C., B.C.'s information and privacy commissioner from 1999 to 2010 and deputy attorney general from 2010 to 2012. He recently wrote to the member for Edmonton Centre, the sponsor of the amendments to strip this bill of its protections. He wrote:

I am deeply disappointed, to say the least, by your motions to gut Bill S-201. Retention of the amendments to the CHRA is laudable as far as that goes, but it is not far enough, to address the very real threat posed...by genetic discrimination in the workplace, in insurance markets and in other areas of life. The fear of discrimination on this basis is amply justified—genetic discrimination is having real-life consequences for Canadians now. It is already harming vulnerable Canadian children now....

More needs to be done—and can be done—by Parliament. I am appalled by your complicity in the executive's thwarting of this critically-important legislation. The supposed constitutional concerns now being bandied about about are a smokescreen and no more, as Peter Hogg...has made plain. I call on you to stand up for Canadian children, for all Canadians, by withdrawing your motions and by fighting against discrimination, not supporting it.

The Liberal justice minister argues that the original version of the bill is unconstitutional, but when they studied Bill S-201 even the Liberal members of the Senate human rights committee were clear that they heard no convincing evidence supporting the justice minister's position. On the contrary, Bill S-201's constitutionality was confirmed by a number of constitutional experts who testified before Parliament, including Peter Hogg, perhaps the leading authority on Canadian constitutional law.

One critical piece of evidence reveals in stark manner the nonsense of the government's constitutional excuse. The Liberal government has removed the bill's employment protections from the Canada Labour Code, which applies solely and completely to Canadians in federally regulated jurisdiction. There can be no argument that it is unconstitutional for the federal government to provide protections to federally regulated employees, yet that is exactly what the Liberal government has done.

I submit that, rather than acting on constitutional concerns, the Liberal government has clearly caved in to pressure from the insurance industry and big business. Disgracefully, the Liberal government has clearly indicated that it will favour corporate lobbyists wanting to protect their profits over the human rights of Canadians wanting to protect their rights, privacy, and health.

However, rather than acquiescing to fearmongering, I am hoping that every member of the House, including Liberal backbenchers, will actually vote to preserve the bill. I know there are good Liberal members on that side of the House who agree with the arguments being made here today.

I will end by quoting Tommy Douglas, who told us, “Courage my friends, 'tis never too late to build a better world”.

I am hoping that the Liberal members of the House will do the right thing, stand up for Canadians' human rights, and vote against this cynical and illegitimate attempt to strip this important bill of the very real protections that Canadians need to protect them from genetic discrimination.

[Luc Berthold, Conservative, Mégantic—L'Érable, QC]

Mr. Speaker, it is my pleasure to rise today to speak to Bill S-201, An Act to prohibit and prevent genetic discrimination.

First, I wish to sincerely thank the author of the legislation introduced in the Senate almost a year ago, in April. The former senator from Nova Scotia Mr. Cowan and his colleagues worked very hard on this bill. I would also like to thank my colleague across the way, the member for Don Valley West, for sponsoring the bill. I also thank all my colleagues who have risen in support of the bill currently before us. Lastly, I wish to thank my colleagues on the House of Commons Standing Committee on Justice and Human Rights, who have also worked very hard. They even proposed an amendment to Bill S-201.

What we are discussing today is protecting Canadians and their families from discrimination based on genetics. Amending the Canada Labour Code and the Canadian Human Rights Act allows us as parliamentarians to do something and to achieve this objective.

In the previous Parliament, the Conservative government committed in its throne speech to adopt measures to prohibit discrimination on the basis of genetic testing, including in matters of employment and insurance. Various countries, including the members of the G7, have already adopted measures to prohibit any such discrimination. Unfortunately, Canada has not yet adopted this type of measure. Bill S-201 in its entirety, without the amendments proposed by the government party, seeks to bridge that gap.

We have some catching up to do, and Bill S-201 can help us do that. Some of my colleagues shared their concerns by providing concrete examples of discrimination and quoting various representatives, particularly representatives of groups that advocate for cancer patients and those suffering from other illnesses.

What is genetic discrimination? Why is it so important that we address this issue today? I would like to quote the Canadian Coalition for Genetic Fairness, which said:

Genetic discrimination occurs when people are treated unfairly because of actual or perceived differences in their genetic information that may cause or increase the risk to develop a disorder or disease.

We are not talking about someone with a disease, or someone who is suffering, or someone undergoing treatment. We are talking about someone who may have a gene that could eventually result in that person developing a disease.

The Coalition goes on to provide examples.

For example, a health insurer might refuse to give coverage to a woman who has a genetic difference that raises her odds of getting ovarian cancer. Employers also could use genetic information to decide whether to hire, promote or terminate workers.

This is all based on the results of a genetic test. The Canadian Coalition for Genetic Fairness also said:

The fear of discrimination can discourage individuals from making decisions and choices, which may be in their best interest. For example, a person may decide not to have a genetic test for fear of consequences to their career or the loss of insurance for their family, despite knowing that early detection and treatment could improve their health and longevity.

That is what the Canadian Coalition for Genetic Fairness has said and how it describes the situation.

The concrete examples I just gave are, in my opinion, valid reasons for us as parliamentarians, in whom the voters have placed their trust, to pass legislation that protects them from all forms of discrimination. The voters expect us to act.

We do not want to stop progress. We want to see a continuation of the progress made possible by scientific research. We want to be able to treat more and more individuals thanks to the work of researchers. We want to discover the treatment for diseases faster. We want to know earlier and earlier who is predisposed to one day developing this or that disease. If we can help them prevent these diseases, all the better.

Indeed, genetic testing identifies those who are predisposed to developing some of these diseases.

That said, as a society, we cannot allow these discoveries to pave the way for discrimination. As I said a few moments ago, we heard from many who expressed their fears and serious concerns, and I must admit that I share their fears.

Some of my colleagues in the House spoke about the cases of individuals who were turned down for jobs or promotions based on the results of tests to determine whether or not they carried certain genes or whether they were predisposed to develop certain diseases. Testimony to that effect was heard in the Senate. Some of my colleagues here could tell horror stories like those. We cannot allow these discriminatory practices to occur.

If passed, Bill S-201 will give Canadians peace of mind, since it will give them the assurance that their genetic history will not be able to be used to determine the future well-being and security of their families.

If insurance companies use that history to refuse life insurance to an individual or his or her family members, we, as legislators, will have failed in our duty to ensure that none of our fellow citizens are discriminated against on this basis.

I am concerned about the Liberal government's plan to make major changes to the legislation that our Senate colleagues introduced and studied. The Liberal government seems to have changed its mind in recent weeks. I am very concerned. That is what I heard in the speech the member just gave. Given what is being reported in the media and the government's proposed amendments, it looks like the government is planning to gut Bill S-201, leaving just a shell. It will take away everything that could have given Canadians extra protection vis-à-vis genetic tests they have taken in the past or will take in the future.

In a piece published on March 2 in Le Devoir, we learned that the Minister of Justice spoke about having to go through the provinces to avoid any confrontation. There was mention of the Constitution and jurisdiction. When it is time to act to defend Canadians, I think it is a real shame that this measure, which was introduced by a government member in the House, is literally being gutted.

The government wants to lift the ban on insurance companies requiring the disclosure of past results of genetic testing. The Liberal government will have decided to let Canadians and their families down if the members from the government majority decide to support the proposed amendments. I hope that the government will recognize that Canadians’ right to privacy is more important than the interests of insurance companies.

When we go to the doctor, it is to get care. When we undergo testing, it is because we want to get better and we want to cure a disease. When we undergo a complete physical and are asked if we want a genetic test to know if we are predisposed to developing cancer one day, we want to be able to say yes without fear that it will affect our financial well-being, without fear that it will affect our family in the future.

Bill S-201 deserves the support of parliamentarians. On this side of the House, we will support Bill S-201. We believe that parliamentarians must absolutely support this measure. I invite my colleagues opposite, all my colleagues who are not in Cabinet, to vote for Bill S-201 for the good of all Canadians.

[Jennifer O'Connell, Liberal, Pickering—Uxbridge, ON]

Madam Speaker, genetic testing can quite literally save lives. It allows Canadians who suspect that they might be at a higher risk for certain genetic diseases to take early preventive action. Unfortunately, under our current regime, Canadians often refuse to undergo a genetic test, even based on a recommendation from a doctor, because of the fear of genetic discrimination. This fear is not unfounded, as a recent Canadian study found that 40% of individuals with Huntington's disease experience some form of discrimination based on their genetic test results. That discrimination can come in the form of unfair insurance practices, being passed over for a promotion, and even being fired. Unfortunately, there are a number of documented cases of genetic discrimination in Canada, and that number will only continue to grow until we, as parliamentarians, fill that legislative void.

This is not only an issue of discrimination but is a legitimate public health issue. If Canadians continue to fear genetic tests because of the lack of legal protection from discrimination, they will be unable to access the best possible health care options available.

It is also important to note that a number of developed countries around the world have a regulatory system in place to protect their citizens from genetic discrimination. Many of our counterparts around the world, such as France, Germany, and Spain, all have legislative frameworks to protect the genetic privacy of their citizens and to guard against genetic discrimination. The U.K. and the U.S. also have some systems in place, whether it is a moratorium placed on the use of genetic information by insurance companies or a prohibition against genetic discrimination in health insurance and employment.

Unfortunately, Canada lags behind these countries on this important issue, and our laws have not kept pace with science when it comes to genetic testing. With the passing of this legislation without amendment, we would be able to provide support and protections for our citizens, as some of our international counterparts do.

I would be remiss in my remarks if I did not mention the insurance industry claims that premiums will rise if this important piece of legislation passes. That concern has been addressed, because this bill does not even contain the word "insurance". Although it is true that previous versions of the bill did contain insurance-specific provisions, they have been removed to address concerns about adverse selection and the constitutional issues that would arise because of it.

It is also important to note that in countries where similar legislation has been passed, the insurance industry has not been adversely affected or as severely damaged as feared. Research would also suggest that this would apply here in Canada as well. In fact, that assertion was confirmed by the Privacy Commissioner in July 2014, when he stated at a Senate committee that “the impact of a ban on the use of genetic test results by the life and health insurance industry would not have a significant impact on insurers or the efficient operation of insurance markets”.

Peter Hogg, a pre-eminent constitutional law expert, spoke in front of the justice committee on Bill S-201 and has also written on this topic in his book Constitutional Law of Canada. In it he states that “The authority to enact legislation of this kind is distributed between the federal Parliament and the provincial legislatures according to which has jurisdiction over the employment, accommodation, restaurants and other businesses or activities, in which discrimination is forbidden. Most of the field is accordingly provincial under property and civil rights in the province. However, there is little doubt that the federal Parliament could if it chose exercise its criminal law power...to outlaw discriminatory practices generally.”

Any debate on this issue must, of course, recognize the important role the provinces play. In Mr. Hogg's testimony to the Standing Committee on Justice, he pointed out that the double aspect doctrine was relevant, because there are other precedents where the criminal law power has been exercised. Mr. Hogg used the example of the Highway Traffic Act, where the federal government enacted criminal law while the provinces enact prohibitions related to property and civil rights.

He further clarified that this legislation would “simply be making it an offence to discriminate on the basis of genetic characteristics”. This is something I agree with wholeheartedly, and I feel Canadians want a national standard not to be discriminated against because of their genetic makeup. This is something I agree with and I hope that the House will, as I said earlier, fill that void.

It is also important to note that this legislation has the support of organizations like the ALS Society of Canada, the Alzheimer Society of Canada, the Canadian Breast Cancer Foundation, the Centre for Israel and Jewish Affairs, the Canadian Human Rights Commission, Parkinson Canada, and the Huntington Society of Canada, along with many of my own constituents.

As I mentioned earlier, patients with Huntington's disease are among the most likely to experience degenerative discrimination. It is crucial that we as parliamentarians do all we can to protect Canadians from genetic discrimination and modernize our existing laws to ensure we keep pace with developed countries around the world. I am honoured to have the opportunity to speak on Bill S-201 here tonight and proud to lend it my full support.

The House resumed from February 14, 2017, consideration of Bill S-201, an act to prohibit and prevent genetic discrimination, as reported (with amendment) from the committee, and of the motions in Group No. 1.

Preclearance Act, 2016

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Mr. Speaker, I will make a quick response to the comment that was just made about the work of committees. A lot of experts came before committee with respect to Bill S-201 and Bill C-22 and made recommendations that were unanimously adopted by that committee, only to have the government completely ignore and refute those recommendations.

In asking us to put faith in the committee process and in the government respecting that process, I am sorry to say that my patience with that line of argument is wearing very thin at the moment.

My question to the member is about the part of the bill that gives authorization to U.S. customs officials to carry firearms on Canadian soil. I have yet to hear a convincing argument from the Liberal benches as to why this is necessary. Why, when we have a perfectly capable police force in Canada, would we cede this kind of sovereignty to U.S. agents on Canadian soil?

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you very much, Mr. Chair.

I would like to welcome our witnesses to the committee.

It's good to see you again, Mr. Marceau, after we exchanged ideas on Bill S-201 last year.

Mr. Mostyn, I want to go to your testimony. I didn't catch the amendments that you suggested in place of the terminology “primarily used”. Could you just go over those again, please?

Justice

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Madam Speaker, after the justice committee reported Bill S-201 back to the House, the Liberal government made an astonishing move. The government is trying to gut this important bill by deleting the majority of the clauses at report stage. This would send a green light to companies to discriminate based on genetic conditions.

At the eleventh hour, the Liberals caved to pressure from the insurance industry. Why is the government more interested in protecting the profits of insurance companies than in protecting Canadians?

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Madam Speaker, as the vice-chair of the Standing Committee on Justice and Human Rights, I would like to thank the member for Hamilton Centre for his continuous work in bringing transparency and accountability to the House.

He is correct. Bill S-201 is an important bill, intended to protect Canadians against unfair treatment by insurance companies based on their genetic information.

To answer his question, the justice committee held five meetings and heard from 28 witnesses. The overwhelming testimony was in support of the current draft of the legislation, and the committee itself reported the bill back without amendment.

[David Christopherson, NDP, Hamilton Centre, ON]

Madam Speaker, Bill S-201 is legislation designed to protect the rights of Canadians to the privacy of their own genetic information. Currently, Canadians who receive genetic testing on a variety of medical issues are at risk of being denied insurance coverage if they fail to turn this information over.

Could the chair or the vice-chair of the justice committee update the House on how many expert witnesses testified and how many meetings were devoted to the study of Bill S-201 before the bill was reported back to the House?

Motions in amendment

[Jennifer O'Connell, Liberal, Pickering—Uxbridge, ON]

Mr. Speaker, I rise today to speak to Bill S-201, an act to prohibit and prevent genetic discrimination. Many of my comments will be similar to those members have heard today, but I thought it important to add my voice to this debate.

I want to thank the hon. member for Don Valley West for sponsoring the bill in the House and for his important work and advocacy on this issue.

The study of genetics is a complicated one. In my conversations with stakeholders and constituents, it was fascinating to learn about a field that remains a mystery for many Canadians.

A genetic test, according to the federal medical devices regulations, is a test that analyzes DNA, RNA, or chromosomes for the purpose of prediction of disease or vertical transmission risks, or monitoring diagnosis or prognosis.

In Canadian health care institutions, tens of thousands of genetic tests are conducted each year to diagnose disease, guide treatment, inform reproductive planning, and to test for influences and drug responses. As of this moment, if a Canadian has a genetic test, there is no law, federal or provincial, that provides protection against a third party demanding and attaining access to those test results.

Bill S-201, if passed, will provide much needed protection for Canadians against discrimination on the basis of genetic tests or characteristics. It will do so by, among other measures, prohibiting the collection, use, or disclosure of genetic test results without prior consent. It will also add genetic characteristics to the list of prohibited grounds of discrimination under the Canadian Human Rights Act.

The bill, if not amended, would also provide employees with the right to refuse undergoing genetic testing and/or disclosing the test results to their employer. Employers would also be prevented from dismissing or retaliating against an employee for exercising those rights.

If our government is committed to protecting Canadians from the possible misuse of their genetic information, then this bill is an important step toward helping prevent genetic discrimination, while safeguarding their privacy. The fact is that as genetic testing technologies become more accessible and sophisticated, access to online genetic information has become widespread. Protecting Canadians from genetic discrimination is a pressing issue now more than ever, as genetic testing for both diagnostic and predictive purposes has become a normal part of medical practice.

Factors such as family history or one's ethnicity can increase the chances of certain genetic mutations. Genetic testing can quite literally save lives as it allows Canadians who suspect they might be of high risk to take preventative action.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Mr. Speaker, I rise this evening in strong support of Bill S-201, an act to prohibit and prevent genetic discrimination, and in strong opposition to the amendments brought forward by the hon. member for Edmonton Centre and the Parliamentary Secretary to the Minister of Justice and Attorney General of Canada, which would have the effect of gutting this important piece of legislation.

At the outset, echoing the comments from the hon. member for Don Valley West, I want to acknowledge the tremendous work of Senator James Cowan, who recently retired after serving in the other place for 12 years with distinction. I also want to acknowledge the hon. member for Don Valley West for his tireless advocacy on this important issue.

The hon. members for Cowichan—Malahat—Langford, Niagara Falls, and Don Valley West very ably set forward the arguments that were heard before the justice committee in great detail about the constitutionality of Bill S-201. Simply put, it is not in question. The constitutionality of Bill S-201 is clear, and I do not intend to elaborate any further on that point. However, I want to talk about why Bill S-201 is a good bill, and why it is so important that we see this legislation passed, and why we stand up against the government's effort to gut the bill.

In recent years we have seen a tremendous transformation in medicine as a result of genetic testing. As recently as three years ago, there were some 2,000 genetic tests. Today, there are more than 48,000 genetic tests. That number continues to rise each and every day.

Advances in genetic knowledge and technologies and their resulting applications present tremendous opportunities in medicine. Information from genetic testing can help patients seek early treatment and modify lifestyle choices, to minimize the impact of a genetic mutation. Genetic testing guides the selection of pharmacological therapies. Genetic testing can help prevent disease and illness. With early detection and treatment, genetic testing can save lives.

While there have been tremendous advancements in genetic testing and in genetic medicine, absent robust safeguards, genetic information can be misused and abused. As a member of the Standing Committee on Justice and Human Rights, I along with the members of the committee heard very clear evidence that genetic discrimination occurs in Canada. We heard evidence of genetic discrimination in the provision of insurance, evidence of genetic discrimination in the area of employment, and evidence of genetic discrimination in housing, among other areas.

We heard evidence of a young mother who had her life insurance policy rescinded because she told her insurer that her mother had been diagnosed with breast cancer and that her mother had a BRCA mutation. We heard evidence of a young man who lost his position of employment because he told his employer that he had a genetic mutation. We heard evidence of a landlord who required that tenants provide medical information, including genetic information, failing which they would lose housing privileges.

We heard evidence from Dr. Cohn, the chief pediatrician at Toronto's Sick Kids Hospital, who gave compelling evidence of parents, literally with tears in their eyes, refusing to have their children undergo genetic testing, even though that testing was the best way forward in terms of identifying the right treatments for those children, all because they feared genetic discrimination.

Despite the fact that genetic testing is real, when it happens in Canada, there are literally no safeguards. There are no laws on the books to protect Canadians from genetic discrimination. Consequently, Canadians are faced with two choices. They can either undergo genetic testing and face the risk that they will experience some form of genetic discrimination, or they can forego genetic testing, foregoing an opportunity for early detection, early treatment, and the potential to save their lives. That is a choice that no Canadian should have to face.

Bill S-201 closes the legislative vacuum by doing three key things. The hon. member for Don Valley West has referred to the bill as a three-legged stool. What the government is doing is removing two critical legs of that stool.

As a result of the amendments being brought forward, the government would be gutting a section of Bill S-201 that would amend the Canada Labour Code to establish a complaints process for federally regulated employees to bring forward complaints about genetic discrimination by their employers.

The government is leaving intact the amendment to the Canadian Human Rights Act, which would establish and expressly incorporate into the Canadian Human Rights Act that genetic characteristics constitute a prohibited ground of discrimination. That part of Bill S-201 is an important component of the bill in terms of updating Canada's human rights laws and making it absolutely clear that genetic discrimination is unacceptable and clearly constitutes a prohibited ground of discrimination under the Canadian Human Rights Act. However, make no mistake, the burden falls on the complainant to advance a Canadian Human Rights Act complaint.

That is why the most important section, which is being gutted by the government, would prohibit someone who is providing a service or entering into a contract with another person from requiring someone to take a genetic test or to provide genetic test information. Further, it would prevent someone from sharing the genetic information of an individual without their consent. It is that part of the legislation that is so critical. That part of the legislation would give Bill S-201 teeth. It is that part of the bill, the essence of the bill, that is, shamefully, being gutted by the government.

Bill S-201 is comprehensive. It is robust. If it is passed, and the government's amendments are rejected, Canada would go from having no laws, being the only country in the G7 without laws to protect Canadians from genetic discrimination, to having some of the strongest and most robust anti-genetic discrimination laws in the world. Let us pass Bill S-201, and let us reject the amendment brought forward by the government.

[Rob Oliphant, Liberal, Don Valley West, ON]

Mr. Speaker, I want to begin my remarks today echoing the previous speaker, who was thankful for the tremendous work of the recently retired Senator James Cowan, who put his heart and his soul, his head, and his hard work into getting this bill to us today.

I also thank the members of the Senate human rights committee who spent hours getting the bill right so that it could pass there unanimously and get to this, the other place, in their words.

I thank the patients and the doctors, the parents and researchers, the advocates, legal scholars, the many health groups, and the Centre for Israel and Jewish Affairs that persisted in making sure that this bill passed at second reading and got to the Standing Committee on Justice and Human Rights, so ably chaired by the member for Mount Royal.

I thank all the members of that committee, and also the former justice minister and the member for Cowichan—Malahat—Langford, both for their remarks and for their work on the committee; and the whole committee for sending it back to this House unchanged so that we could consider it, pass it, and start making a difference in the lives of Canadians this very day. It is a rare opportunity that we in this House can actually pass a bill that will change the lives of millions of Canadians and change it for the better for sure.

Unfortunately the amendments presented by the member for Edmonton Centre would essentially gut this bill. If they are passed, they would rob it of its ability to help all Canadians and limit its effect to very few. For me, the bill as it stands right now is the only way to ensure that all Canadians, regardless of where they live, where they work, where they receive health care; and where they may face discrimination in family law, labour law, or with respect to the provision of any good or service, will not be discriminated against because of their genetic characteristics. This is a bold law. It is a 21st century law designed to combat a 21st century problem new to us since the discovery of the human genome. The proposed amendments would, as I said, make the protection envisioned in this bill so narrow and so small as to make it impotent in the face of a problem that any Canadian could be challenged with. Unfortunately, the member for Edmonton Centre is new to the justice committee. He did not have the advantage of being part of it when, after very careful consideration, the committee chose to return the bill to this House with full and complete support for every one of its clauses.

The committee considered the medical necessity of the bill, the horrendous choices faced by adults and particularly parents of young children who have to decide whether to undergo a genetic test in the face of possible discrimination. The committee members saw the social evil of failing to protect every Canadian, ensuring that we all get the best health care possible. They also considered the jurisdictional questions, and came to an all-party conclusion. I am so happy to have brought together the NDP and the Conservatives. It does not happen often enough, but it is Valentine's Day and I am sensing some love there. This is an all-party conclusion that it is indeed within the right and the responsibility of the federal government to enact this bill.

Legal scholars appearing before the committee did not all agree, but the majority said without hesitation that they believe it is within our powers, the powers of everyone here, to pass this bill. The committee considered the concerns of the insurance industry and its fears that rates for life insurance would go up if the bill passes. The committee, however, also learned from the Privacy Commissioner, who undertook two studies and determined that “the impact of a ban on the use of genetic information by the life and health insurance industry would not have a significant impact on insurers and the efficient operation of insurance markets.”

The justice committee could have chosen to vote down each of the eight clauses that are proposed to be deleted, but it did not. The members of the committee chose to protect the integrity of all three aspects of this bill, what I have referred to as a three-legged stool, and they did that after very careful consideration of all the evidence.

Now the government is proposing to delete almost every section of the bill, including the title. How could it have reached such a different conclusion than those of our colleagues on the justice committee? The arguments that they heard at committee were different. We have heard that the argument the government has is jurisdictional, but according to Professors Bruce Ryder of Osgoode Hall; Pierre Thibault of the University of Ottawa; and the most distinguished constitutional scholar in our country, Peter Hogg, who has been cited over 1,000 times in Canadian courts including the Supreme Court of Canada, Bill S-201 is a valid constitutional exercise of federal criminal law power.

The Supreme Court of Canada has repeatedly emphasized that the criminal law power is very broad and can apply to areas that would normally be under provincial jurisdiction, especially to counter social evil.

There are many examples of the Supreme Court, which has upheld this doctrine for food and drugs, tobacco, firearms, security training, assisted human reproduction, and more.

Is genetic discrimination a social evil?

Just ask the parents who go to Toronto's SickKids hospital. Just ask them what it is like when, as Dr. Ronald Cohn has said, parents of very sick children have been paralyzed by the fear of genetic discrimination. If a fear of discrimination is so great that it prevents a parent from having their child receive a genetic test that could save their life, is that not a social evil? This is not anecdotal. The CMA told committee that it ,“strongly supports the enactment of Bill S-201 in its entirety.... Canadians deserve to have access to the best possible health care without fear of genetic discrimination”.

Peter Hogg said, “The only conceivable purpose of [the bill] is to prohibit and prevent what Parliament would regard as the evil of genetic discrimination”.

To sum up, the Canadian Human Rights Act changes are simply not sufficient to do the job at hand. That is the only part the government would save. The act only applies to sectors and industries within federal jurisdiction.

Amending the Human Rights Act would be of little, or even of no, assistance to most Canadians who encounter or fear genetic discrimination. In fact, it could be dangerous. People could have the false assumption they are being protected, but could lose their job, could lose in a family law case, could lose benefits, could be denied insurance, or anything else that we assume should be protected under Canadian law.

Canadians want strong laws to protect their rights. They want to ensure that the federal government is taking action to protect them. The government claims that federal action alone cannot ensure the protections that stakeholders are calling for.

I support the call for additional provincial legislation, but almost every witness that the committee heard from told them that strong federal action is absolutely necessary. The federal Parliament can take action and can do so while respecting our Constitution. That is our job.

I ask members of this House to defeat these amendments, pass the bill as it stands, make a difference in the lives of Canadians, and ensure that all Canadians have the health care they deserve.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Mr. Speaker, it is an honour to stand here and add my voice in strong support of Bill S-201, an act to prohibit and prevent genetic discrimination.

I want to recognize the hard work of Senator James Cowan, recently retired, who has been shepherding this legislation in one form or another for several years now. In light of his retirement, it would be a tremendous gesture on the part of the House to honour his work on this legislation and pass the bill without amendments.

I also want to acknowledge the hard work of the member for Don Valley West who has sponsored this bill in the House of Commons and has provided convincing and sustained arguments for its passage every step of the way.

Finally, I want to thank my colleagues on the Standing Committee of Justice and Human Rights who I worked with on this bill through five meetings. I especially want to thank my Liberal colleagues on that committee for having the courage to stand up against the wishes of their government and help pass the bill through the committee without any significant changes.

I support the need to protect Canadians from genetic discrimination through strong federal legislation. We believe all Canadians should be afforded the best health care possible, and genetic testing is increasingly part of health care prevention. Accordingly Canadians should have a right to know their genetic characteristics without fear of discrimination by employers or insurance companies.

Indeed, with few exceptions, the vast majority of witnesses said that the passage of the bill with all of its main clauses intact was vital to protect against genetic discrimination. My Liberal colleagues on the committee did well to listen to the evidence during the clause-by-clause consideration of the bill to pass it in its present form.

There are three main pillars to Bill S-201, which my colleague for Don Valley West refers to as the three legs of a stool, all are necessary to keep the stool from falling over.

First, the bill would enact a new genetic non-discrimination act to prohibit any person from requiring an individual to undergo a genetic test or disclose the results of that test as a condition of the following: either providing goods or services to an individual, or entering into and continuing a contract or agreement with that individual. These changes are detailed through clauses 1 through 7 of the bill.

Second, the bill would amend part III of the Canada Labour Code to protect employees from being required to undergo or disclose the results of a genetic test and would provide employees with other protections related to genetic testing and test results. These changes are detailed in clause 8 of the bill.

Finally, the bill would amend the Canadian Human Rights Act to prohibit discrimination on the grounds of genetic characteristics. That is part of clause 9.

I want to make it very clear for all hon. members that the bill must pass with all of these provisions in place in order to make it effective.

During the witness testimony, we heard from a variety of witnesses. We had the Canadian Human Rights Commission, the Centre for Israel and Jewish Affairs, the Canadian Coalition for Genetic Fairness, the Canadian Association of Genetic Counsellors, the Canadian Medical Association, and the Canadian College of Medical Geneticists. We had several constitutional experts, including Bruce Ryder, Peter Hogg, Hugo Cyr, and Pierre Thibault. We also heard from the Canadian Institute of Actuaries, and had moving testimony by Dr. Ronald Cohn, the pediatrician and chief at the Hospital for Sick Children.

In particular, there are a few examples of the testimony that I want to include in my limited time.

Representatives from the Canadian Human Rights Commission have testified that if this bill were amended to contain only the clause to amend the Canadian Human Rights Act, we could not responsibly tell Canadians that they could feel free to have genetic testing without the fear of genetic discrimination. In fact, Ms. Marie-Claude Landry, none other than the chief commissioner of the Canadian Human Rights Commission, underlined this when she stated, “While changing the Canadian Human Rights Act will be a positive step for human rights, it cannot address all the concerns surrounding genetic discrimination.”

Dr. Ronald Cohn gave particularly moving testimony at the committee about young children whose conditions required genetic testing for diagnosis, but whose families felt they could not consent to the testing for fear of genetic discrimination. Without the testing, he could not properly treat these very sick children.

Dr. Cohn and over 100 genetic scientists, medical doctors, genetic councillors from universities across Canada wrote to the Prime Minister in November of last year and urged him to retain all of the key provisions of the bill as it was passed by the Senate.

The committee also heard captivating testimony from the Canadian Medical Association, the Canadian Association of Genetic Councillors, and the Canadian College of Medical Geneticists about the medical promise of genetic testing and the revolution in medicine it presented. However, the full potential of genetic testing will not be realized if people are legitimately worried about discrimination.

I want to turn to the constitutional issues. I see that the member for Edmonton Centre, who has recently joined us on the justice committee, has moved several report stage amendments to Bill 5-201. His motions call for the deletion of clauses 1 through 8, which will effectively gut the bill and turn it into nothing less than a paper tiger when it comes to protecting Canadians against genetic discrimination.

The deletion of these clauses will leave the bill with nothing more than an amendment to the Canadian Human Rights Act, which will give Canadians a false sense of security that they will not be discriminated against because of genetic testing. I pointed to this fact earlier in my speech from the testimony of the commissioner of that commission.

I have respect for the member for Edmonton Centre, but this action on his part makes me more than a little angry. These amendments flagrantly ignore the recommendations of the committee and they are an insult to the witness testimony and the hard work of that committee.

One of the main concerns of the legislation was the constitutionality of the proposed genetic non-discrimination act. In fact, the minister in a letter to the justice committee, dated November 17, 2016, outlined the government's concerns with the aforementioned clauses. She felt that it intruded into the provincial jurisdiction over the regulation of contracts and services.

Our committee consulted with a variety of constitutional experts, one of whom was none other than the great Professor Peter Hogg. He is probably the most consulted constitutional scholar in Canada. These eminent scholars clearly held the view that the prohibitions listed in the first clauses of the bill were a clearly justified use of the federal criminal law power.

In previous rulings, the Supreme Court of Canada has held that a valid criminal law power requires (1) a prohibition; (2) a penalty, and (3) a criminal law purpose such as peace, order, security, morality, and health. Federal criminal law power against a public health evil relies on the fact that it is directed against human conduct that has a injurious or undesirable effect on members of the public.

The Chief Justice of the Supreme Court has stated that “acts or conduct that have an injurious or undesirable effect on public health constitute public health evils that may properly be targeted by the criminal law”.

Discrimination based on genetic testing does have an injurious and undesirable effect on public health. When people are too afraid to go for genetic testing because of the fears of discrimination, this does not allow physicians to do their job properly. Taking a test that could help someone's life should not be a calculated risk.

I ask all hon. members in the House, especially my Liberal colleagues across the way, to please summon the courage to do what is right, support the bill without these amendments, listen to the hard work that the committee did, and let us do something right for Canada. Let us get rid of these amendments and pass the bill as it was passed by the Senate.

[Rob Nicholson, Conservative, Niagara Falls, ON]

Mr. Speaker, I am very surprised, quite frankly, at the comments by my colleague.

When this was before committee, those who testified generally agreed that it was within the Constitution of this country. We heard evidence completely on that. The hon. member said he is completely supportive of all the efforts behind this, but when the bill has been gutted, that gets called into question. I am very disappointed on that, quite frankly. I would have been interested in hearing what they heard from the Province of Ontario. I am sure, when those members were out soliciting legal opinions, the Province of Ontario told them it was okay. Did it? I can imagine that is what it said.

Despite that, I am pleased to support this bill because it is important. It would prohibit requiring any individual to take a genetic test or to disclose the results of that genetic test.

The time has come for us to do something about genetic discrimination. It can take many forms, all of which are unjust and feed the Orwellian mentality, which can be destructive to the welfare of a free and open society.

Genetic testing is routinely used as a tool for medical diagnosis, which is a positive thing. As the science of genetic testing has evolved into a multi-billion dollar industry, so too has the possible misuse of this information in ways that are contrary to patients' best interests. Canada, unlike most other western nations, has not kept pace with the rapid growth of the genetic field and thus has no laws provincially or federally that protect Canadians from having their own genetic information used against them.

This bill would ensure that Canadians are fully protected against employers or insurance companies that would deny employment or ensure coverage.

Studies indicate that there are also grave social consequences to the misuse of genetic testing. It is a dangerous precedent, as certain groups may encounter discrimination based on their race. For instance, people could be evaluated not on the basis of their merit and abilities, but on predictions of future health and/or their performance based on ethnicity. For instance, in the United States, African Americans statistically do not live as long as Americans of European descent, even when there are no socio-economic factors present. Scientists have also discovered that Jewish people can have a propensity for Huntington's disease. They too could be denied insurance.

Increasingly, and rightly so, patients are reluctant to agree to have their medical genetic testing done for fear the results may be used against them, thereby putting their own health at risk even when such testing might prevent disease and give the patient the opportunity to adopt lifestyle choices to avoid medical complications.

Recently, The Globe and Mail reported on a case of a 24-year-old professional who was dismissed after sharing with his employer that he had tested positive for Huntington's disease, although his symptoms would not manifest for approximately 20 years. Canada is the only G7 nation not to have protections in place for citizens like him.

Currently, there are 38,000 genome tests that can be done, and that number is growing exponentially, daily indeed. Canada has not kept pace with the science, and it is imperative that we do so now. It is our duty.

Bill S-201 would prohibit service providers from demanding or requiring a person to disclose past results of genetic testing in order to exercise prejudice. Insurance companies and employers are not the only ones in this area that can be affected by forced disclosure.

If we do not pass this bill, it will become exponentially harder to pass in the future, in my opinion, but it would do the right thing in protecting people from possible discrimination.

We have to get involved with this. There are legal opinions. The bill fits perfectly within federal jurisdiction. I am sure the hon. member and others in the government in their solicitations were looking for reasons to defeat this legislation. As I pointed out to them, the provincial jurisdiction with the largest justice department in Canada happens to be in Ontario. What did Ontario say? Ontario said it is okay with this. It does not have any particular objections to this bill.

This is an opportunity for all members of Parliament, regardless of which political party they are a part of, to stand up and do the right thing. I hope this gets passed by all members of the House.

[Randy Boissonnault, Liberal, Edmonton Centre, AB]

moved:

Motion No. 1

That Bill S-201 be amended by deleting the short title.

Motion No. 2

That Bill S-201 be amended by deleting Clause 2.

Motion No. 3

That Bill S-201 be amended by deleting Clause 3.

Motion No. 4

That Bill S-201 be amended by deleting Clause 4.

Motion No. 5

That Bill S-201 be amended by deleting Clause 5.

Motion No. 6

That Bill S-201 be amended by deleting Clause 6.

Motion No. 7

That Bill S-201 be amended by deleting Clause 7.

Motion No. 8

That Bill S-201 be amended by deleting Clause 8.

Mr. Speaker, I will use my time to address Bill S-201, an act to prohibit and prevent genetic discrimination, and the amendments that were tabled yesterday, which propose to delete clauses 1 through 8 of the bill.

I will begin by noting that the proposed amendments were neither the subject of discussion nor debate before the Standing Committee on Justice and Human Rights during its consideration of the bill. It is important to take this opportunity to address some critical concerns arising from the proposed legislation.

I will first clarify that I fully support the intent of Bill S-201, which is to protect Canadians from being discriminated against on the basis of their genetic characteristics. I agree wholeheartedly that no one should be singled out solely on the basis of a genetic predisposition to a particular disease or condition. That is why I believe fundamentally that the amendments to the Canadian Human Rights Act should remain in this bill as a matter falling squarely within the federal jurisdiction.

As all members of this House are aware, it is our duty as parliamentarians to ensure that we fundamentally respect the Constitution before passing any laws. Part of that duty means that we must remain vigilant of the constitutional division of powers between the federal Parliament and our provincial counterparts. In particular, clauses one through seven of Bill S-201, which would enact the genetic non-discrimination act, or GNDA, intrude into provincial jurisdiction over contracts and the provision of goods and services.

This is not about abstract or academic concerns, nor is it about solely co-operative and respectful federalism, which forms the bedrock of democracy in this country. This is a matter of our fundamental obligation, as members of Parliament, to ensure that legislation complies with our Constitution.

I share the concerns previously expressed by the government. Cabinet is certainly not alone in this view, as a number of the provinces have written to the government in opposition to the GNDA portion of Bill S-201. I will return to these letters shortly, but first I will offer some background on the constitutional responsibilities we have with respect to our provincial partners.

The Constitution Act of Canada calls for a separation of powers between the federal Parliament and the provincial and territorial legislative assemblies by theme. Based on these shared jurisdictions, the Parliament of Canada can only legislate on the powers included in the Constitution and residual powers, while provincial legislatures have their own areas of jurisdiction.

To determine whether the federal legislation respects this division of powers, the courts look to whether the law's “pith and substance”, what the law is really about, relates to a federal area of power.

The act to prohibit and prevent genetic discrimination prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of offering or maintaining specific conditions in a contract or agreement, and of providing goods or services.

When we look at this context, it is clear that the legislation in question, in its wording and substance, regulates contracts and the provision of goods and services. These things fall fully under provincial legislative jurisdictions over property and civil rights.

The Constitution engages concerns that are bigger than any one piece of legislation, no matter how laudable its intent. As written, the GNDA impedes on a critical set of powers which belongs exclusively to the provinces.

I will now focus my attention to the responses from the provincial governments. Over the past few weeks, our government has received a series of letters from the provinces of Quebec, British Columbia, and Manitoba on the matter of Bill S-201. Every one of these letters suggest that the act to prohibit and prevent genetic discrimination would encroach on an exclusively provincial jurisdiction.

In one letter co-signed by three Quebec ministers, the Hon. Stéphanie Vallée, minister of justice and attorney general of Quebec, the Hon. Carlos Leitão, minister of finance, and the Hon. Jean-Marc Fournier, minister responsible for Canadian relations and the Canadian francophonie, opposed the act to prohibit and prevent genetic discrimination.

They said that by virtue of the subject matter of the bill, it constitutes a clear intrusion in exclusively provincial jurisdictions. They add that the regulation of contracts and the provision of goods and services are in fact matters that fall under provincial jurisdiction. They say that, like us, they refer to the jurisdiction of the provinces and the Supreme Court's position in Reference re Assisted Human Reproduction Act, whereby the extent of Parliament's power to legislate criminal law must not upset the balance of the division of powers.

The ministers concluded by suggesting that there should be a more collaborative and respectful approach to the federal-provincial division of powers in order to address the issue of genetic discrimination.

Next is a letter from the Hon. Cameron Friesen, the Minister of Finance in Manitoba. Minister Friesen expresses similar concerns to those of his Quebec colleagues, stating, “We have consulted with other governments and among my staff, and we agree that there is considerable potential for this act to stray into areas of provincial jurisdiction over insurance. As you might expect, provinces are not inclined to relinquish our constitutional authority, and certainly not without discussion. Provinces will likely be forced to seek judicial review on the validity of this legislation if it receives royal assent.”

Minister Friesen also draws attention to the broader policy discussion regarding disclosure of genetic information that ought to occur between the federal and provincial governments before comprehensive legislation is passed.

The third letter comes from the Hon. Suzanne Anton, the Minister of Justice and Attorney General of British Columbia. Minister Anton begins by noting that the B.C. government is “very supportive” of the intention behind Bill S-201. She underscores her government's commitment to the protection of basic human rights, and raises significant concerns with Bill S-201.

Minister Anton states, “However, we share the view...that the proposed Act may go beyond Parliament's legislative jurisdiction. In fact, we would identify the following considerations relative to the issues raised by this Bill: 1...the proposed Bill has the potential to encroach in a number of areas of provincial jurisdiction, and as such, would benefit from a more comprehensive review and amendment prior to passage; and 2. Proportionality: In reviewing the potential consequences for an act of prohibited discrimination under the Bill relative to a comparable discrimination under human rights legislation, it appears that the consequences of this Bill would be significantly greater and arguably disproportionate relative to the consequences of actual discrimination.” The minister concludes by stating that as a result of these concerns, the Government of British Columbia opposes Bill S-201 in its current form.

In reviewing these letters, there is no doubt that as a government we are running the risk of provoking and impeding upon the jurisdiction of our provincial partners. That is why we have proposed the deletion of clauses 1 through 7 of Bill S-201. It is not because of disagreement with the stated goal of the bill. In fact, the contrary is true. It is because of a sincere belief in upholding the fundamental balance of federalism, without which our country cannot function. This issue is too important to not get right.

In my remaining time, I will briefly address reasons for proposing the deletion of clause 8 of Bill S-201, which contains the amendments to the Canada Labour Code, CLC. Employment-related discrimination in Canada is typically addressed by human rights legislation like the Canadian Human Rights Act, not by labour legislation. There is concern about singling out one specific form of discrimination for protection in the CLC, and about establishing a separate complaints mechanism under the CLC that would only consider complaints of genetic discrimination. By amending both the CLC and the Canadian Human Rights Act, we would be creating two parallel and overlapping avenues for redress. This would be confusing for employers and employees, and could result in conflicting decisions and an inefficient use of public resources. In Canada, addressing discrimination falls squarely under the purview of the Canadian Human Rights Commission, and that is where it must remain.

Bill S-201 also departs from the traditional and respectful approach to labour law reform, which involves consultation and consensus building between employers, labour unions, and the federal government. For these reasons, clause 8 of this bill should be deleted.

While recognizing the tremendous work that has gone into the development of Bill S-201, only the amendments to the Canadian Human Rights Act should be supported by the House.

In closing, I wish to emphasize that all Canadians should be protected from genetic discrimination, a matter that requires ongoing co-operation between federal and provincial governments. Such important intergovernmental co-operation must and will continue to protect the rights of all Canadians.

Speaker's Ruling

[The Assistant Deputy Speake, Liberal, Anthony Rota]

There are eight motions in amendment standing on the Notice Paper for the report stage of Bill S-201. Motions Nos. 1 to 8 will be grouped for debate and voted upon according to voting patterns available at the table.

I will now put Motions Nos. 1 to 8 to the House.

The House proceeded to the consideration of Bill S-201, an act to prohibit and prevent genetic discrimination, as reported (with amendment) from the committee.

[The Chair, Liberal, Anthony Housefather]

Thank you very much, Mr. MacGregor.

Before I thank the witnesses, because I don't want to lose the members of the committee, we have the request for the project budget approval for our study on Bill S-201 in the amount of $11,100.

Do I have the approval of members of the committee to agree to this budget so that we can reimburse the witnesses on Bill S-201?

Mr. McKinnon, will you move that?

Justice and Human Rights

[Anthony Housefather, Liberal, Mount Royal, QC]

Mr. Speaker, I have the honour to present, in both official languages, the seventh report of the Standing Committee on Justice and Human Rights on Bill S-201, An Act to prohibit and prevent genetic discrimination.

The committee has studied the bill and has decided to report the bill back to the House with an amendment.

[Colin Fraser, Liberal, West Nova, NS]

That's why I explained it in the way I did, where S-201 comes into effect, C-16 would wipe out S-201's wording.

[Peter Monette, Manager, Bioethics and Science Advice, Strategic Policy Branch, Department of Health]

Yes, I'll take a shot at this. As clarification, I'm with Health Canada, not with Justice.

The concern I have with the amendment is that it offers a bit of a problem with interpretation. The original Bill S-201, from our understanding, has quite general provisions for physicians, pharmacists, and researchers, so we didn't have any issues with it. We thought that our practices were exempt.

I think the amendment introduces some issues with interpretation so we do.... As has already been mentioned here, several interpretations have to be done both for the practice of medicine and also for research. We would have to go back to try to find out what all those implications would be, and we haven't had the time to do that.

[The Chair, Liberal, Anthony Housefather]

It's great to have you both.

Today we're proceeding with our clause-by-clause study of Bill S-201, an act to prohibit and prevent genetic discrimination.

From the Department of Justice today we have Laurie Sargent with us. Laurie, I'm not going to use your huge title today. You've been here enough times that everybody knows you now. We're joined by Élène Bérubé, by Peter Monette, by Lori Straznicki—and it's always good to have a second Lori here—and Barbara Moran.

Welcome to all of you. You're here to answer our questions with respect to anything that we have as we go through clause-by-clause review. Members of the committee can feel free to call upon you if they have questions or clarifications. Again thank you very much for being here.

Ladies and gentlemen, we're going to proceed to the bill.

Our first item is going to be clause 2, which is the interpretation clause.

Does anyone have any amendments they wish to propose to clause 2?

Not hearing any, I will then move to the vote on clause 2.

(Clause 2 agreed to)

(Clauses 3 to 5 inclusive agreed to)

(On clause 6)

Mr. Falk has presented an amendment to clause 6.

Mr. Falk.

[The Chair, Liberal, Anthony Housefather]

Ladies and gentlemen, welcome to this meeting of the Standing Committee on Justice and Human Rights.

We are going to proceed to our clause-by-clause review of Bill S-201, an act to prohibit and prevent genetic discrimination. We have one short item before we do that, which is the NDP is replacing its committee member, and Mr. MacGregor is now going to be joining our committee permanently. I'm going to turn it over to the clerk for one brief moment.

Mr. Clerk.

[Sean Casey, Liberal, Charlottetown, PE]

Thank you, Mr. Chair and colleagues.

My first question is for Dr. Graham. We heard what I thought was some pretty compelling testimony on Tuesday from the Institute of Actuaries. They talked about a situation in which a patient has an EKG that indicates a diagnosis and where there could be a genetic test that could result in the provision of the same information. One needs to be disclosed. The other doesn't.

That brings me to the whole question of the nature of the genetic information, in that certain information is for diagnostic purposes, certain information is for predictive purposes, and certain information is for research. Bill S-201 does not differentiate between any of the proposed purposes, but in England, for example, they do.

I'd be interested in your perspective on the value of differentiating within the legislation the purposes for which the genetic information is being used and adopting or tailoring rules around its disclosure based on its use.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you for that.

I want to turn to a different issue, and in particular the Torys opinion. I don't know if any of you have had an opportunity to review it. I certainly am not necessarily endorsing the legal analysis, but it's their argument that, in order for Parliament to properly exercise its criminal law power in matters relating to health, there must be a public health care “evil” or a health care “evil”, and that's right. That's accurate. They try to distinguish the underlying purpose of Bill S-201 as not combatting a “public health evil”, but rather promoting “beneficial” medical health practices.

I know you have alluded to the different negatives or consequences of someone forgoing genetic testing, but maybe you could put on the record what it might mean for the health of an individual who, for whatever reason—because of fear of discrimination—decides that they don't want to undertake a genetic test. What might that mean for that patient's health?

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you.

Ms. Bensimon, I'm very interested in this. So far, we have just been looking at the constitutionality of this bill, and there have been so many legal arguments, but seeing as you hold the very interesting position of director of ethics, I'm wondering if you could inform this committee of how you approach viewing Bill S-201 from a purely ethical standpoint.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you very much, Mr. Chair.

Thank you to the witnesses for appearing today.

It's good to see you again, Dr. Forbes. I remember our meeting earlier in the year.

As you've correctly referenced, we've had some very illuminating testimony on this bill from constitutional experts. The government feels that this particular bill is going to be imposing federal jurisdiction in an area of traditional provincial jurisdiction, in contracts and services; however, that view has been counteracted by none other than Professor Hogg. Professor Hogg is probably the most-referenced constitutional scholar in Canada, and I think that when he speaks, he speaks with a certain amount of authority. It is clearly within his view that the constitutionality of this bill falls strictly within federal criminal law power. He feels it's a valid exercise.

However, to be fair, I do want to read out to you some of the opposing legal arguments that have come from the Torys law firm, which was hired for the insurance industry. They feel that courts have relied on the criminal law power to uphold a variety of federal statutes on the basis of a “public health evil”. In each of the cases, the criminal law power has been directed at human conduct that has “an injurious or undesirable effect on the health of members of the public”. Their conclusion is that they feel that the first clauses of Bill S-201 do not address a public health evil.

Dr. Forbes, I'd like to get your response to that.

[Dr. Gail Graham, Past-President, Canadian College of Medical Geneticists]

Thank you very much.

First of all, thank you to Dr. Forbes and the CMA for taking a very reasoned and proactive stance on Bill S-201, and thanks to all of you for the privilege of addressing this committee on behalf of the Canadian College of Medical Geneticists.

We are the doctors who diagnose and treat patients with genetic diseases. In preparing this statement, we asked ourselves what can we possibly tell you that you have not already heard from informed individuals such as MP Oliphant, Senator Cowan, and Bev Heim-Myers, from esteemed researchers, and also from very learned constitutional experts.

We can speak as doctors across our country who care for patients with genetic conditions. We can say very clearly that genetic discrimination and fear of discrimination are not just theoretical, as some have argued. We can say that it truly changes behaviour. We can say that it influences patients' decisions in clinics across the country every single day. We can say that it sits in the clinic room between us and our patients when they consider the pros and cons of a predictive genetic test for hereditary cancer, for example.

We can say that it lingers forever when a patient declines a test that had a 50% chance of demonstrating that she does not have a hereditary cancer syndrome and therefore might not require the imaging surveillance that her doctor will be compelled to recommend for the rest of her life. We can say that it sometimes wastes health care dollars, and we can say that it prevents some of our patients' family members from ever seeking or following through with a referral to our clinics. I know that Dr. Forbes has had that very experience.

We can say that it deters patients from participating in the very research that might further our understanding of their genetic condition. We can also say that genetic testing is not always valid and not always straightforward, because our interpretation of test results is in its infancy and is evolving rapidly over time. Sometimes, genetic testing mislabels individuals with genetic conditions or predispositions to a particular disease, when in fact they are healthy and will remain healthy.

For all of these reasons, the CCMG unequivocally supports Bill S-201. We commend the senator and his policy adviser, Barbara Kagedan, for their tireless work, which has recently been recognized internationally in the form of an Advocacy Award from the American Society of Human Genetics.

You have already heard that we are the only G8 country that does not enjoy this protection, and I find it ironic that this initiative is celebrated by another country before it has even been enshrined in law here in Canada.

Our first message, which is not new to you, is that we must act now, not months from now and not years from now. The complete sequence of the human genome was drafted in 2000. Just over 15 years later, we have already linked 5,000 of the estimated 20,000 genes to so-called rare human genetic diseases, and we know of thousands more gene variants that influence predispositions to common health conditions such as diabetes and heart disease.

Those numbers are rising every single day. Genetic testing has become a critical tool in many disciplines of medicine, not just to diagnose disease, but also to guide the selection of personalized treatments. That includes imaging surveillance and medications.

This is the very promise of the human genome that Francis Collins spoke of in his historic announcement of the completion of the human genome project just over 15 years ago. It is incredibly empowering, both for patients and for their doctors, but as long as there is no legislative protection for genetic information, patients are vulnerable, and if our experience to date is any judge, many of them will forgo the benefits of genomic medicine. I feel very strongly that we have a duty to change that.

Our second message is that you are our patients. Most of you, at some point in your lifetimes, will have the ability to determine your susceptibilities to common diseases through genetic testing. Would you prefer to have this information to yourselves and act upon it to mitigate your risks, or would you prefer that it is also in the hands of your insurers or your employer? How comfortable would you be in subjecting yourself to a genetic test without this protection? How comfortable would you feel if I asked you to provide a sample of your saliva to a genetics laboratory before this legislation has passed?

Our third message is that, yes, it is important to alter the Canadian Human Rights Act to include the words “genetic characteristics”. Canadians believe that it is equally as abhorrent to use one's genome against an individual as it is to use their race or their disability. Canadians believe in protecting our most vulnerable, whether they are disabled by birth or by accident.

These are values we embrace, and our human rights act should reflect that, but that is not enough. Without the other two pillars of the stool, the non-discrimination act and the amendments to the labour code, there will be no deterrent to insurance or employment discrimination on the basis of genetic test results.

I've read the transcripts of these hearings. I know that you have already heard that the Office of the Privacy Commissioner has two studies that do not predict that the insurance industry will be harmed by this legislation, and that similar legislation in other countries has not hampered that industry. You have already heard from three of four constitutional expects that this bill is soundly within the purview of the federal government.

You have already heard that the provinces have not raised concerns about this legislation, despite being given ample opportunity to do so. You have already heard that Ontario is moving to support the concept of protection against genetic discrimination with Bill 30, which would amend the provincial human rights act, and that you have heard that Bill 30 is designed to work in partnership with Bill S-201—they need each other.

The CCMG urges you to do the right thing for Canadians and endorse this bill without amendments.

What I want to be able to say to my patients is that you don't have to worry about this anymore. You can make the choice that's best for you and for your family without fear. You can base your decisions on sound medical evidence.

Thank you very much. We appreciate the opportunity to offer our perspective.

[Dr. Cindy Forbes, Past-President, Canadian Medical Association]

Thank you very much.

Thank you, Mr. Chair, and thanks to all of you.

I'm Dr. Cindy Forbes. I'm a family physician from Nova Scotia and the past president of the Canadian Medical Association. As you may be aware, the Canadian Medical Association represents 83,000 Canadian physicians. I'm joined today by Cécile Bensimon, who is the director of ethics.

The CMA very much welcomes this opportunity to appear before the committee as part of your study on Bill S-201, the genetic non-discrimination act. As part of my opening statement, I will focus on the national importance of federal legislation preventing genetic discrimination.

At the outset, however, let me state that the CMA strongly supports the enactment of Bill S-201 in its entirety, that is, maintaining the three core elements of this bill. At the core of the CMA's support is the fact that this legislation addresses discriminatory barriers related to genetic testing, an emerging issue that is about patient care.

Genetic discrimination, and the fear of this discrimination, may potentially negatively impact the patient-physician relationship. This is a concern that I encourage you to consider carefully, and I welcome your questions on that.

Genomic medicine holds great promise in the diagnosis and therapeutic treatment of many known and new diseases and, ultimately, in enhancing the quality of life of many patients. We are witnessing the transformative development of genomic medicine, with a rapid expansion in genetic testing. This transformation and the availability of new genetic tests are allowing for the discovery of new genetic conditions, as well as early diagnoses that will benefit patient care.

Before us is the prospect of transforming clinical medicine and patient care at a pace that will only accelerate in the foreseeable future. Today, genetic testing is aiding in the early diagnosis of numerous conditions, including many forms of cancer, heart disease, and dementia, to name only a few. As well, our ability to genetically test for new conditions is continually increasing.

Of great concern to Canada's doctors and their patients is the fact that public policies and legislation have not kept pace with this transformation. Genetic discrimination is both a significant and an internationally recognized phenomenon. As you heard from other witnesses, Canada stands alone amongst the G8 as the only country that has not established legislative protections in the face of this major transformation.

While genomic medicine will continue to have broader clinical applications, the fear of genetic discrimination is both widespread and real. As a primary care provider, I have experienced, in having conversations with my patients, their very real fear of discrimination.

As Canada's doctors, it is the CMA's position that Canadians deserve to have access to the best possible health care without fear of genetic discrimination.

Genetic discrimination presents several negative consequences. The most concerning consequence may be patients who feel they must hide their family history from their health care providers, who may never be referred for a genetic assessment, or who may avoid care or treatment for fear of discrimination. These consequences are simply unacceptable in Canada's universal public health care system.

Six out of every 10 Canadians will be affected during their lifetime by a health problem that is genetic in whole or in part. It's important to recognize that genetic testing will no longer be limited to rare, esoteric genetic diseases occurring in patients seen by a handful of specialists across the country. Rather, it's becoming an integral part of broad medical care and, as such, is expected to become mainstream medicine.

While genomic medicine is still in its infancy, it's already changing the face of modern medicine. Every year, every month, and every week, new genetic conditions are discovered using these tools. Patients who were undiagnosed for years are now finally receiving diagnoses thanks to these genomic advances. Early diagnoses are actively influencing medical management.

The way we deliver genetic care to our patients has radically changed over the last decade, and there's no reason to believe that this growth will plateau anytime soon.

There are obvious economic and productivity impacts if patients are not able to be diagnosed and we are not able to provide appropriate care. Ironically, at a time when genomic technologies have broader clinical applications than ever before, the fear of genetic discrimination is preventing some Canadians from benefiting from these advances. For these reasons, the CMA strongly supports the enactment of Bill S-201 without amendment.

My colleague and I would be pleased to address any questions you may have. Thank you.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you. I'm going to move on to Dr. Cohn.

Dr. Cohn, earlier today, and of course before today's committee hearing, we received the submission from the Torys law firm, which outlined why they oppose Bill S-201. Specifically they state that clauses 1 through 7 of Bill S-201 do not address a public health evil. That is their position. They feel that criminal law power cannot be used to promote medical practices.

I would argue that, yes, it's not up to federal criminal law power to promote medical practices. That's your job. That's the job of provincial health ministries. However, given your testimony and your direct experience, would you not say that this law is trying to create the conditions in which you can operate freely to promote health, to protect your patients' fears of a legitimate concern over discrimination?

I would like you to go into a little more detail on that particular aspect.

[Ahmed Hussen, Liberal, York South—Weston, ON]

Thank you, Chair.

Thank you, gentlemen, for coming in to speak to this committee about Bill S-201.

My first question goes to Mr. Boudreau and Mr. Howard. You mentioned in your paper to us that, according to your research, premiums could go up by 30% for males and by 50% for females, regardless of their genes or whether they have been tested or not.

According to the testimony of Senator Cowan, one of the sponsors of the bill before our committee, he indicated that for the countries that have instituted a ban on genetic discrimination there was no significant increase in premiums, certainly not 30% to 50%. Do you care to comment on that?

[Stephen Frank]

Thank you, Chair.

I'm Stephen Frank, senior vice-president of policy for the Canadian Life and Health Insurance Association. I am accompanied by my colleague, Frank Zinatelli, who is vice-president and general counsel at the CLHIA.

The CLHIA represents life and health insurance companies that account for 99% of the life and health insurance in force across Canada. The industry protects 28 million Canadians and makes benefit payments of $84 billion a year.

We appreciate this opportunity to appear before the committee as it reviews Bill S-201. As drafted, we do not support Bill S-201. Our central issue is that, over time, it would likely result in an increase in the number of Canadians who do not have insurance. In addition, we do not believe that clauses 1 to 7 of the bill are constitutional.

Let me elaborate on these issues and also highlight what the industry is doing to address concerns over the protection of individuals' genetic information, while ensuring that insurance remains affordable for Canadians.

Insurance is a good faith agreement. At the time of application, parties disclose any information that may be material to the contract so that the contract can be entered into on an equal information basis. This ensures that the applicant knows what benefits are being provided and that the insurer can properly understand the risk in order to make an informed decision about whether to provide life insurance to that individual and at what price.

This principle is protected in insurance legislation in every province and territory. Under this principle, and with the express consent of the applicant, insurers use family history, lifestyle and medical information to set prices that fairly reflect the level of risk of insurance applicants. Using genetic test results already in the hands of the applicant is a logical application of this principle. This helps ensure that the costs of insurance reflect each individual's risk and that some individuals are not inappropriately paying for or subsidizing the cost of insurance for others.

Experience tells us that if an individual gets a genetic test result that confirms that they're more likely to develop an illness or other condition earlier in life than the general public, they will seek out insurance and they will seek out more of it than they otherwise would have.

Ultimately, this will result in higher premiums for other consumers as insurers will need to increase premiums for everyone to cover these unanticipated higher costs. As you've heard already, the Canadian Institute of Actuaries has concluded that not allowing insurers to have such relevant information would over time lead to increases in term life insurance of 30% for men and 50% for women.

We know that Canadians are price-sensitive. As prices rise, many thousands of them will likely decide not to purchase insurance due to cost considerations. Therefore, a likely result of any prohibition on insurers having equal information when assessing an application for insurance, is that fewer Canadians will have protection from unfortunate events than otherwise would have.

We also do not believe that section 1 through 7 of the bill fall within the constitutional jurisdiction of Parliament. The predominant effect of those sections would be to regulate the provisions of goods and services and the terms of contracts including in the insurance industry. Sections 1 through 7 of the bill, therefore, fall clearly under the property and civil rights head of power, for which the provinces have exclusive constitutional authority.

There have been previous testimony on this bill that it could be considered constitutional based on the federal criminal power. The federal Parliament has broad and plenary power in relation to criminal matters. However, the federal Parliament cannot legislate within an area of exclusive provincial jurisdiction, simply by casting the legislation as criminal. The Supreme Court of Canada has indicated that Parliament's ability to pass criminal law that addresses health is limited. Genetic testing information does not fall under this category.

As well, please note that sections 1 through 7 of Bill S-201 target a specific category in specific contexts, including insurance and employment, and do not have a criminal law purpose. They're not aimed at prohibiting genetic discrimination generally and cannot be supported under the federal criminal law power.

Our comments are supported by the views of the Torys law firm, in an opinion that we have obtained. We have provided copies of the legal opinion to the clerk to distribute to members of this committee.

As an industry, we understand that genetic testing information is sensitive medical information. This is why the industry already has in place an Industry Code, in which all life and health insurers commit to a variety of obligations, including that no Canadian will be asked to take a genetic test as a condition of obtaining insurance.

Beyond this, however, we are committed to proactively finding a solution that balances the concerns of Canadians regarding the use of genetic testing results with the need for fair and reasonably priced insurance.

As such we've been actively working on this for many months and recently initiated discussions with the provinces on an approach where insurers in Canada would commit to not asking for or using any genetic test results for applications for life insurance policies up to $250,000. At this level more than 85% of applications for life insurance would not require any disclosure of genetic test results, and therefore, will address the concerns around this issue for the large majority of Canadians.

This approach would also keep the cost of life insurance affordable for the average middle-class family. We hope to be in a position to make an announcement with respect to this initiative shortly.

In conclusion, Bill S-201 would undermine the critical principle of equal information and would likely result in an increase in the number of Canadians who do not have insurance over time. In addition, we do not believe that the sections of the bill dealing with insurance are within federal powers. However, we understand that genetic information is sensitive to Canadians. We've started discussions with the provinces about finding a balanced solution that will appropriately protect Canadians' genetic information while also maintaining fair and reasonably priced insurance.

We appreciate this opportunity to participate in the committee's review. We would be pleased to answer any questions you may have.

Thank you.

[Dr. Ronald Cohn]

Thank you very much, Mr. Chair, and thanks to the committee for providing me the opportunity to speak to you.

I would like over the next few minutes to try to bring to life some of the discussions you have been having over the last few weeks, and to provide you with evidence that genetic discrimination is real. It's a frequent problem in this country that's affecting thousands and thousands of individuals.

I'm here today speaking not only on behalf of the 197 colleagues around the country who have sent a letter to all of you, but also on behalf of health care providers all over Canada, and maybe most importantly, I'm here to speak on behalf of every individual in Canada who is potentially at risk of being faced with genetic discrimination at some time in their lives.

I will provide you with three examples that address the issue that we are facing in the health care community.

I will give you an example of how genetic discrimination interferes with our ability to provide high-quality, safe, and best-standard clinical care to our patients, something that, in part, can be paralyzing for us as health care providers.

I will provide you with an example of how fear of genetic discrimination can interfere with our ability to perform the kind of research we need to actually move forward our standard of clinical care and continue to improve it, and at the same time think about the health care cost and try to keep it down.

Last but not least I will give you an example of the preventative aspect that the fear of genetic discrimination has, where without genetic testing, individuals cannot act upon certain knowledge and put measures into place that will provide protection or help to avoid a life-limiting or a life-threatening disorder.

Let me start with the first example—and it's sad for me to say that I've been in Canada for four and a half years now, and there are too many examples that I could choose from since I've moved here. I chose the example of a young girl who came to my clinic because she was thought to have a connective tissue disorder. The issue with that disorder was that she would be put at risk of her big blood vessel, coming out of her heart, the aorta, being torn, which would be a life-threatening problem.

Once I examined her, I discussed with the family the offer of genetic testing to find out whether she has a more severe or a milder form of this disorder. When I went through the consent process and we had to discuss the issue of genetic discrimination, both parents were very agitated about it. The mother was looking for a new job, and she said she was afraid that this might interfere with her ability to get that job. The parents did not have life insurance, and they said they did not want to go forward with the genetic tests. As a result, this child has to come to the hospital every three months to get an ultrasound of her heart, and is living with the fear of having the more severe form of the disease, but taking this fear over the fear of genetic discrimination.

I would like each one of you to put yourself for one minute into my shoes, knowing that I am not able to provide the right standard, best practice of care because the family declined to go forward with genetic testing. It has been paralyzing at times to me and to other health care providers to simply not do the job I learned and was trained how to do.

The second example is of a research study in which we were trying to answer the question of whether whole genome sequencing—the sequencing of your entire genome—would be a much better test to diagnose a medical condition, and also a much cheaper test for the health care system.

We approached about 200 families. I would like you to think for a moment about families who have had children for many years, most of them with very severe medical conditions, who are trying to look for an answer as to why this is happening to their child. When we offered them the chance to participate in the study, telling them, “There's a really high likelihood that we'll find an answer for you”, they were elated, excited, as you can imagine. Yet again, when it came to the consent process, over 35% of families elected not to participate because of a fear of genetic discrimination.

What that shows you is that, despite being on a search, a journey, to try to find an answer for “what is wrong with my child?”, parents elected not to go after that because of the fear that they would have issues with genetic discrimination. At the same time, it corroborated, somehow, that our study made it much more difficult to do this kind of research to actually prove that this is a better test, it's a cheaper test, and that's the test that we should offer the Canadian public if you are in a situation like this.

The last example I'm going to give you is about a young adult woman who has a family history of colon cancer. Her mom had colon cancer. She elected to do genetic testing, in order to find out whether she has a genetic form that predisposes her to this cancer.

When she went through the consent process, I don't want to repeat myself too much, again she was faced with the fact, “I can't get life insurance. What I will do is I will get yearly colonoscopies to screen myself so, in case something happens, I know that I can protect myself.”

The issue is, if you are young, you don't get yearly colonoscopies covered by OHIP if you don't have genetic evidence in order to actually be allowed to get that covered. In the end, she decided her health was more important than insurance issues. She did the genetic tests and was found positive and is in now in a situation to do yearly colonoscopies and is actually going to be able to prevent any kind of medical complication from happening.

While I'm not here to talk about industry or insurance issues, I would like everyone to consider that the preventative aspect and the preventative power of genetic knowledge gives many individuals the opportunity to take action to actually stay alive, healthy, as long as possible, and as a bi-effect, obviously, pay your insurance premium.

I hope I was able to bring to light some of the issues and, based on this, I'm going to go out on a limb and urge all of you to accept Bill S-201 without any amendments, in full, as it is, so every Canadian can have a better life, free of genetic discrimination for everyone.

Thank you.

[Robert Howard]

Thank you very much, Mr. Chair.

You may not have intended it, but the anti-selection that Bill S-201 would allow confers a benefit on those who test positive for certain genes. They know that they will be able to buy insurance priced to cover a risk much lower than their own risk. Suppose Bill S-201 is enacted as is, and then you learn that, say, your son-in-law carries a gene for a serious, often fatal, heart condition. Wouldn't you recommend that he buy life insurance, and a lot of it? If you answered yes, you are agreeing that anti-selection is real and that the law confers a benefit on those who test positive.

How big will the impact be? I created a model on behalf of the Canadian Institute of Actuaries, and I wrote two papers on it just to answer that very question. My model suggests that premiums for life insurance are likely to go up by 30% for males and 50% for females because of the prohibition in Bill S-201. That's a lot. That's what most of your constituents will be facing soon after the passing of Bill S-201. We believe that you didn't intend to do something that would result in a big jump in costs for your constituents. We don't think that it's in the public interest to do so.

If you're familiar with the paper written by Angus Macdonald, in 2011, the size of the impact may surprise you. I can explain why my numbers are appropriate for Canada, if you wish.

It's possible to amend the bill to avoid the unintended consequence of large increases in what Canadians will pay for insurance. Our proposed amendment is in our brief, and it's shown on the slides here. There's a table, as well, that gives the amounts that we're suggesting. The amendment sets a limit for the prohibition on requesting to see the results of a genetic test. Because the limit in our proposal is based on the average weekly earnings as published by StatsCan, it requires no recurring action from Parliament to keep it up to date. A company could use a genetic test if the amount is over the limit and if the mortality impact of the gene is found to be well supported by data. That's what's meant by “reasonable and bona fide grounds”. This chart shows the limits for the various types of insurance.

The amendment directly addresses two concerns. First, there is no restriction on buying insurance after a positive test up to the amount that the average Canadian is now buying. Second, by not applying the prohibition on larger amounts, we won't have the serious anti-selection that would result in large premiums for those who have not been tested or have tested negative.

By the way, even today, Canadians with a positive test can get a significant amount of life insurance. Group insurance is not restricted at all. Mortgage life insurance is not restricted, as opposed to what CMHC offers. There are insurance products sold with no medical questions at all; these aren't restricted. If an individual previously bought guaranteed insurability insurance, then more life insurance can be purchased with no medical evidence. Any insurance that's already owned cannot be terminated by the insurance company because of a positive test. So, fears about access to insurance are not well founded.

Note that the amendment that we will propose will not benefit the insurance companies. The companies are able to adjust their premium rates to protect their own profits.

I don't expect that their profits will, in the long run, be materially different if Bill S-201 is defeated, if it passes as is, or if it's amended as we propose. It's the public that will be hurt, but only if Bill S-201 passes as is. Our proposed amendment would protect.

Thank you, Mr. Chair.

[Jacques Boudreau, Chair, Genetic Testing Committee, Canadian Institute of Actuaries]

Thank you, and thank you for this opportunity.

The Canadian Institute of Actuaries is dedicated to serving the public interest through the provision of actuarial services and advice of the highest quality. The institute specifically holds the duty of the profession to the public above the needs of the profession and its members.

The CIA has applied actuaries' unique skill set to genetic testing and its potential impacts on the Canadian public. I stress that we are not here to speak on behalf of the insurance industry.

The first problem with the bill is that it facilitates anti-selection. There are many components to a robust insurance system and one of them is the ability of the insurer to evaluate an individual's risk based on many inputs, including a variety of medical tests, and placing those with similar risk profiles in a distinct pool. This is a process based on actuarial and medical science that can be best described as differentiation, a foundational insurance concept used for centuries. It insures that for fairness considerations people facing similar risks pay similar premiums. This bill would undermine this time-tested process and introduce the likelihood of pervasive anti-selection, which is the ability of one party to a contract to take advantage of information that is not available to the other party.

The second problem with the bill is that it is discriminatory. When purchasing insurance, Canadians facing a reduced life expectancy discovered through non-genetic medical means such as an EKG or an X-ray must disclose the information they have been asked, and may be declined for insurance. However, under this bill, those with similarly reduced life expectancy discovered through genetic tests may withhold the results and get the insurance they applied for. This distinction is not based on sound actuarial and medical principles. It is completely arbitrary and as such represents the worst form of discrimination.

Let me discuss briefly the experience of the Affordable Care Act in the United States, also known as the ACA or Obamacare, because it's very relevant to this bill. One of its key elements is that insurers are legally required to provide coverage to all applicants regardless of medical history. The premiums basically reflect the age of the insured and the experience within a region, but sex and pre-existing conditions are ignored. This is a textbook condition to encourage anti-selection, which led me and many actuaries and economists to predict the following: one, large spikes in premiums for many people; and two, many people refusing to participate in the ACA and instead paying the fine for doing so, and large losses for insurers. That is exactly what has happened.

Increases of as high at 65% have taken place. An insurance death spiral resulted as the people remaining in the ACA required so much medical care that many insurers lost money no matter how much they raised premiums. Eventually insurers had no choice but to pull out of the program. Aetna and UnitedHealth and many other insurers have done so after massive losses.

The ACA experience is very relevant because its key element is similar to the condition that Bill S-201 would create. In fact, under the bill, the ACA's key element could be rewritten as “insurers are legally required to provide coverage to all applicants regardless of the results of genetic tests, and must set premiums based on age, sex, and smoking status”, rather than “age, sex, smoking status, and relevant genetic information”.

As you can see, the two wordings are close, and it would be remarkable if the bill didn't have similar impacts on the people of Canada who buy individual life insurance. American lawmakers ignored expert advice with the negative results I just mentioned. We can only hope that the proper lesson has been learned so as to avoid a similar debacle in Canada.

Thank you.

[The Chair, Liberal, Anthony Housefather]

Thank you.

I have one short question, if it's okay with the committee.

The actuaries' association is coming before us, and they're recommending to reinsert clauses in Bill S-201 that were removed from previous iterations, which would have specifically governed the insurance industry, in order to say that it does not apply to insurance contracts over a specific value.

As I understand it from your testimony, Professor Thibault,

I imagine you believe that, if we do this, it will make certain parts of the law unconstitutional.

[Iqra Khalid, Liberal, Mississauga—Erin Mills, ON]

Thank you.

Professor Ryder, in your testimony before the Senate committee, you noted that the pith and substance of Bill S-201 is to prohibit genetic discrimination. Now, my understanding is that the prohibition of discrimination falls to whichever order of government has jurisdiction to regulate that area in which the discrimination occurs. In this case then, wouldn't we be talking about discrimination in the area of contracts in the provision of goods and services, which would be under provincial jurisdiction?

That's the question. Do you think that this falls within provincial jurisdiction, by way of discrimination being controlled by the area of that law that falls before that jurisdiction?

[Iqra Khalid, Liberal, Mississauga—Erin Mills, ON]

Thank you, Chair.

Thank you, gentlemen, for coming in today. It was fascinating to listen to all of your perspectives.

With respect to making law, I find that we can never look at anything in a vacuum and we always have to look at the global and the throughout-the-country impact, not just for that specific group but also how it impacts other groups.

Professor Hogg, if I may, I'll take you through a bit of a scenario. Suppose that Bill S-201 has become law, and a father and a son both apply for a job. The father has a medical test disclosing that he has Huntington's disease, and the son has a genetic test disclosing that he has a predisposition to Huntington's disease. As part of the employment conditions, they are both required to disclose their results. Let's say that they both don't get the job based on their medical results and on their genetic results. One would have remedy in the Canadian Human Rights Tribunal and the other would have remedy in the courts. Can you comment on that, please?

[Pierre Thibault]

Yes, okay.

I do not consider it abnormal for there to be overlaps in jurisdiction in a federation. Consider health. Consider criminal law. I will refer to the decision in Canada Western Bank v. Alberta. Since banks sell insurance, there is an overlap when they promote insurance. The same thing applies to regulation, whether federal or municipal, as regards the environment. There will be overlaps.

In my opinion, the effects of Bill S-201 are purely incidental to provincial jurisdiction. If the provinces want to legislate, we can say that they have the jurisdiction to do so under the double aspect doctrine. All I am saying is that the incidental effects doctrine can apply. If we conclude that jurisdiction over criminal acts is not sufficient, we can use the ancillary powers doctrine initially to validate Bill S-201. If we conclude that the jurisdiction in criminal law is sufficient, we can say that it has incidental effects on provincial jurisdiction as regards private law. Once again, this justifies the constitutional validity of Bill S-201.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you, Mr. Chair.

Professor Thibault, can you say a little more about how the pith and substance of Bill S-201 relates to how the ancillary powers doctrine might also apply? We know when there's a potential encroachment on provincial powers we have to make a decision on the proper standard for such a relationship.

[Pierre Thibault]

Thank you, Mr. Chair, for inviting me to appear before the committee today with regard to Bill S-201, which seeks to prohibit and prevent genetic discrimination.

The objective of the bill is in my opinion commendable and warrants consideration. As my colleagues have pointed out, however, we have to consider the legislative impact of this bill as regards the Constitution of Canada. I have examined the new version of Bill S-201 and consider it constitutionally valid.

As I stated when I appeared before the Standing Senate Committee on Human Rights on December 11, 2014, I do not see anything that prevents Parliament from amending the Canada Labour Code and the Canadian Human Rights Act—on the contrary, in fact—and adding provisions to prohibit genetic discrimination without encroaching unduly on provincial jurisdiction for insurance. That is what the new Bill S-201 does.

I also thought that there might be debate about the scope of Parliament's power with regard to criminal law. In my opinion, there are two other ways of justifying the constitutionality of Bill S-201. The first is based on the incidental effects doctrine and the second on the ancillary powers doctrine. Let me explain what these two doctrines entail.

Under the incidental effects doctrine, the constitutionality of a law can be justified based on its purely incidental effects on provincial jurisdiction. Here is what Chief Justice McLachlin said in the Lacombe decision:

The incidental effects rule, by contrast, applies when a provision, in pith and substance, lies within the competence of the enacting body but touches on a subject assigned to the other level of government. It holds that such a provision will not be invalid merely because it has an incidental effect on a legislative competence that falls beyond the jurisdiction of its enacting body.

Under the ancillary powers doctrine, on the other hand, a law can be justified that encroaches on the jurisdiction of the other order of government to the extent that the provisions in question are ancillary and necessary to implement the law effectively and adequately. This means that the law is entirely valid.

This is how Chief Justice McLachlin explains it, once again in Lacombe:

The ancillary powers doctrine applies where, as here, a provision is, in pith and substance, outside the competence of its enacting body. The potentially invalid provision will be saved where it is an important part of a broader legislative scheme that is within the competence of the enacting body.

One could deduce from these explanations that the ancillary powers doctrine and the incidental effects doctrine of a law appear to contravene the exclusive areas of jurisdiction set out in sections 91 to 96 of the Constitution Act, 1867.

It should be noted that the Supreme Court is not in favour of a strict interpretation of this doctrine of exclusive areas of jurisdiction since this would run counter to the principle of cooperative federalism. In Bank of Montreal v. Marcotte, for instance, Justices Rothstein and Wagner state:

A broad application of the doctrine is in tension with the modern cooperative approach to federalism which favours, where possible, the application of statutes enacted by both levels of government.

On these grounds and in view of the state of Canadian constitutional law, it appears to me that Bill S-201, as revised and amended, is constitutionally valid.

Thank you for your attention. I will be pleased to try to answer your questions.

[Prof. Hugo Cyr]

Thank you very much, Mr. Chair, for inviting me to be here today.

This is a topic that I have been thinking about for some time. Last night, I found in my archives a paper on genetic discrimination that I did in 1994 for a certain Professor Irwin Cotler. You will understand therefore that I am in agreement with the principle and objective of Bill S-201. I do however have a number of reservations, specifically as regards the constitutionality of clauses 3, 4, 5, 6, and 7.

I also agree with the letter published by the Minister of Justice regarding the validity of clauses 8, 9, and 10. In my opinion, these clauses are valid and do not pose any constitutional problems.

There are issues relating to legislative policy that have to be considered since there will be an overlap in jurisdiction, namely in labour law and the jurisdiction that will be given to human rights tribunals. This will create a conflict. I will talk in particular about clauses 3, 4, 5, 6, and 7.

In examining the substance of a provision, we have to look at the title, to be sure, but we must also look at what is in it and what exactly it does. Clause 3 prohibits any person from requiring an individual to undergo a test. It is possible to undergo a test to obtain services. The bill does not prohibit it, but it does prohibit requiring someone to take a test as a condition of obtaining services.

Nor do these same provisions prohibit the use of genetic information obtained with written consent for purposes of clarity. Clauses 3, 4, 5, 6, and 7 of the bill do not prevent discrimination on the basis of genetic information. It does, however, prohibit this in the two other parts. Under labour law, a person cannot be punished or have a benefit withdrawn based on test results.

The Canadian Human Rights Act prohibits discrimination based on genetic characteristics, but not in the first part, which simply prohibits requiring someone to provide information for the purpose of obtaining a service or a contract. The real legal effect is to prohibit requiring someone to take a test, to allow information to be disclosed voluntarily, and to allow information to be used if it is provided voluntarily.

The conditions under which a contract is formed or those affecting what in civil law are called personality rights traditionally fall under provincial jurisdiction, as stipulated in section 92.13 of the Constitution Act, 1867. Moreover, section 3 of the Civil Code of Quebec provides as follows: “Every person is the holder of personality rights, such as the right to life, the right to the inviolability and integrity of his person, and the right to the respect of his name, reputation and privacy.” Section 3 is an integral part of the first book of the Civil Code of Quebec, entitled “Persons”. There is also a separate chapter on respect of privacy, starting at section 35.

I will read you a passage from a key decision that elucidates what criminal law is and what can be done under it. This passage is from the Attorney General for Ontario v. Reciprocal Insurers.

In accordance with the principle inherent in these decisions their Lordships think it is no longer open to dispute that the Parliament of Canada cannot, by purporting to create penal sanctions under s. 91, head 27, appropriate to itself exclusively a field of jurisdiction in which, apart from such a procedure, it could exert no legal authority, and that if, when examined as a whole, legislation in form criminal is found, in aspects and for purposes exclusively within the Provincial sphere, to deal with matters committed to the Provinces, it cannot be upheld as valid. And indeed, to hold otherwise would be incompatible with an essential principle of the Confederation scheme....

In this case, it was argued that selling insurance without obtaining a federal license was a crime. The court ruled that it was not. Selling insurance falls under provincial jurisdiction. It is not possible, simply by creating a prohibition and a sanction, to cause the matter to fall under federal jurisdiction under criminal law. In the present case, we cannot consider that requiring someone to give genetic information in order to obtain a service automatically falls under criminal law simply because a sanction is added to the prohibition. As my colleagues have pointed out, we must determine whether this prohibition is criminal in nature.

Allow me to digress for a moment on this subject. If, despite the term used, the subject of the bill is not the transfer of genetic information but rather rights and freedoms and the right to equality, we must remember that these rights do not fall under the jurisdiction assigned to one legislature or another, but instead they fall under a jurisdiction that is ancillary to another. We must therefore stipulate what this other jurisdiction is.

Traditionally, this would be a jurisdiction associated with private law, civil law, and contracts law. That is why the provinces are responsible for the general rules applicable to the right to equality. I would point out in passing that, even though it prohibits a series of discriminatory actions, section 20.1 of the Quebec Charter of Rights and Freedoms provides that in such contracts or plans, that is, insurance contracts or pension plans, “[...] the use of health as a risk determination factor does not constitute discrimination within the meaning of section 10.”

Rightly or wrongly, a provision specifically provides that using health status to determine the extent of risk is not a discriminatory act. Professor Hogg told us earlier that, in his opinion, this is an issue that falls under criminal law. In his book, he states in fact that it may be possible to criminalize discrimination.

He said that under the criminal law power and in making that classification, the courts will look for the ingredients of criminal law—the prohibition, the penalty, and typically, criminal public purpose—and not primarily the law's impact on discrimination.

The criminal nature cannot be deduced simply from the fact of discrimination. Moreover, what constitutes criminal nature?

We have to fight against an evil. We saw the reference on firearms and we discussed that. We talked about the three criteria, which are prohibition, penalty and fighting against a criminal purpose. The courts have pointed out many times that this must not be interpreted too broadly so as not to deplete provincial jurisdiction.

In the Reference re Assisted Human Reproduction Act, the term “reprehensible conduct” is used. Although this decision is fairly complex since there was no consensus, there was agreement on the term “reprehensible conduct”. The term “undesirable conduct” is used often. It is difficult to talk about reprehensible or undesirable conduct in this instance when the Assisted Human Reproduction Act itself recognizes the possibility of providing information voluntarily. It is hard to say that disclosing genetic information is undesirable or reprehensible conduct in itself when section 7 of the act allows it.

I can answer other questions, but, before I conclude, I would stress that in this reference, in examining whether elements are criminal in nature, the decision refers to “conduct that is reprehensible or represents a serious risk to morality, safety or public health”. In this case, the rules on consent in civil law is emphasized. The Supreme Court ruled in this case that the provisions pertaining to information and patient consent are all unconstitutional.

The concern is that there could be a legislative gap. We must remember, however, that our laws prohibit discrimination on the basis of disability, which includes not only an actual disability, but also a potential or feared disability, and even the perception of such a disability. This is established in a Supreme Court decision.

Thank you very much.

[Prof. Bruce Ryder]

Thank you very much, Mr. Chair, and thank you, honourable members.

It's a great privilege to have the opportunity to appear before you today to speak about the constitutionality of Bill S-201, which is a very important initiative. In my view, the doubts that have been expressed in some quarters about the constitutional validity of the bill are a mistake.

I believe it's a valid exercise of Parliament's power. In particular, the more controversial parts of the bill from a constitutional point of view—not from my perspective but from the perspective of some—sections 3 through 7, the part that's going to be a new free-standing genetic nondiscrimination act is a valid exercise of Parliament's power to enact laws in relation to criminal law because it consists of, in its dominant characteristic, putting in place prohibitions in sections 3 through 6, and a penalty provision in section 7 for the purpose of protecting the health of Canadians.

I'm going to say a few words about the scope of section 91(27), and a few words about the bill itself. I'd like to emphasize the importance of a constitutional doctrine in this context, which we refer to as the double aspect doctrine.

What we mean by that is that there are some subject matters, like genetic discrimination, that can be addressed by both levels of governments within their respective spheres of jurisdiction. This subject matter can be addressed by Parliament in part through it's criminal law power, and of course, it also falls within the jurisdiction of the provinces. I hope I can offer some clarity on that point as well.

First of all is the criminal law power, and you're going to hear from the other members of the panel about its scope. This is a very broad federal power that has been defined by the courts as allowing Parliament to enact laws that have, as their dominant characteristic, putting in place prohibitions coupled with penalties for a typically criminal public purpose, such as the protection of public peace, order, security, health, and morality.

I'm quoting the leading decision of the Supreme Court of Canada on the scope of the criminal law power, a decision known as the “margarine reference”, which was decided by the Supreme Court in 1949 and has been the leading case that has been followed by the courts ever since.

The court has repeatedly emphasized that the criminal law power is a very broad power. It has served over the years to uphold, of course, many provisions of the Criminal Code, but many provisions of other statutes as well.

In my testimony to the Senate committee earlier this year, and in the brief that I've prepared for this committee as well, I've listed some examples of federal statutes that have been upheld pursuant to the criminal law power. They include provisions of the Food and Drugs Act, the Tobacco Act, the Firearms Act, the Youth Criminal Justice Act, the Controlled Drugs and Substances Act, provisions of the Criminal Code that relate to the securities trade, the prohibited activities provisions of the Assisted Human Reproduction Act, and part V of the Canadian Environmental Protection Act, which deals with toxic substances. Those are just some examples from the case law.

It's also true that the provinces have jurisdiction in relation to property and civil rights pursuant to section 92(13) of the Constitution Act 1867. This too has been a provision that the courts have interpreted broadly, and it includes regulation over most aspects of the regulation of the insurance industry. It includes regulation of the labour relations of most employers because most employers fall within provincial jurisdiction.

It's also true that the provisions of the genetic non-discrimination act, in sections 2 through 7 of this bill, have a significant impact on activities that fall within provincial jurisdiction, such as the insurance industry and activities of provincially regulated employers. That, however, is true of most provisions of the Criminal Code, or at least many provisions of the Criminal Code; that is, they deal with matters like theft, which is also in relation to property which is a provincial area of jurisdiction.

There are significant portions of the Criminal Code that deal with the solemnization of marriage, the conjugal offences, and the unlawful solemnization of marriage. Again, this is a provincial subject matter, pursuant to section 92(12).

In other words, we can say that much of the Criminal Code deals with matters that are double aspect matters, meaning they can be regulated by the federal Parliament pursuant to its criminal law power with regard to particularly harmful activities, and can be regulated from a provincial point of view pursuant to jurisdiction over property and civil rights. Therefore, I don't think we need to dispute whether or not this is a law that will have important impacts on provincial areas of jurisdiction. It will, but that's not determinative of its constitutional validity.

To determine its constitutional validity we have to ask if its dominant characteristic is to put in place prohibitions coupled with penalties in order to combat harmful conduct or to combat a social evil, or should we be worried that this is a kind of surreptitious attempt for Parliament to regulate the insurance industry, or to regulate provincial employers? I don't believe there is any reason to conclude that is the case. If that were the case, we would say this is colourable legislation, that its form is disguising its true purpose, which is to regulate provincial matters as opposed to suppressing harmful conduct or to suppress a social evil that we think is damaging to Canadians' health.

That's the key question, not whether this is a law that has an impact on provincial areas of jurisdiction. Of course it does, but that's true of most of the Criminal Code, for example.

The question we have to focus on is the pith and substance or dominant characteristic of the provisions of the bill. Is the dominant characteristic putting in place prohibitions coupled with penalties to protect the health of Canadians, or is it the regulation of a subject matter that falls within provincial jurisdiction? To determine pith and substance, the courts will examine the purpose of legislation as well as its effects, the title of the legislation as set out in clause 1 of the bill, the “Genetic Non-Discrimination Act” is important.

Clauses 3, 4, and 5 put in place prohibitions on requiring individuals to undergo genetic testing, on requiring them to disclose the results of a genetic test, and on the use of genetic test results without written consent. The aim of these provisions is to promote health and personal security and to protect privacy by protecting individuals' control over the decision of whether to undergo testing and over the uses of genetic test results. These prohibitions apply to any person. They do not mention any particular industry or type of actor.

Clause 6 provides exemptions from the prohibitions for health care practitioners and researchers, and clause 7 puts in place serious penalties for the violation of the prohibitions in clauses 3 through 5. In my view, it is evident that the dominant characteristic of these provisions is to put in place prohibitions coupled with penalties aimed at protecting individuals from threats to health and personal security posed by the use of genetic information without their consent.

The pith and substance of these provisions fall squarely within the definition of criminal law followed by Canadian courts ever since the margarine reference. They do not resemble the detailed and extensive regulation of assisted reproduction services, for example, of the type that were declared invalid by the Supreme Court of Canada in the Assisted Human Reproduction Act reference, or the detailed regulation of the insurance industry that was declared invalid in a series of cases decided in the first half of the 20th century, where the federal Parliament was seeking to assert jurisdiction over the insurance industry more generally.

Rather, clauses 3 through 7 of Bill S-201 are very similar in their nature and objectives to the prohibited activities provisions, including the prohibitions on the use of reproductive material without consent that were upheld by the Supreme Court of Canada in the Assisted Human Reproduction Act reference.

I'll be happy to go into further detail about the case law, or other aspects of jurisdiction of Parliament over human rights laws generally, or over discrimination generally, and how federal jurisdiction interacts with provincial jurisdiction in discussion with members of the committee.

Thank you very much.

[The Chair, Liberal, Anthony Housefather]

Good morning, ladies and gentlemen.

It is a pleasure to convene this session of the Standing Committee on Justice and Human Rights as we resume our study on Bill S-201, an act to prohibit and prevent genetic discrimination.

I'd like to welcome Mr. Lukiwski who is joining us this morning.

It's a pleasure to have such an esteemed panel of scholars here to share with us their views on constitutionality and policy on Bill S-201.

Professor Ryder, welcome.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

I'm going to just read a quick quote, and I'd like to have all of you respond. On Tuesday, we had the sponsors of the bill here. Mr. Oliphant stated, and I quote here:

I have been a chair of a human rights commission. The onus in a human rights complaint is put on the complainant. It's on the patient, who may actually be struggling and may not have the financial resources. The act would—

and that's Bill S-201

—ensure that the crown is acting on behalf of the population to ensure that we have strong deterrents to this form of discrimination, and it would make it fundamentally important for all Canadians....

Ms. Gibbons, starting with you, I'd like to hear comments from all of you on that specific quote, whether you agree with it, and so on.

[Richard Marceau]

It is my professional opinion that Bill S-201 would stand a constitutional test based on the division of power, and I agree with your colleague, former minister Nicholson, who said earlier that the creation of such a criminal offence falls squarely within federal jurisdiction.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

I hope I can do it.

Thank you, Mr. Chair.

Mr. Marceau, I'll start with you. I'm going to read you a quote from the minister's brief here. She states, “...the scope of the criminal law power should not be extended in ways that potentially undermine the constitutional division of powers.” Then she goes on to say, of course, “The regulation of contracts and the provision of goods and services are subject matters that ordinarily fall within provincial legislative jurisdiction.”

Is it your opinion that the criminal law power expressed within Bill S-201 fits within the constitutional jurisdiction of the federal government? Just looking at the minister's statement, are you in disagreement with her? Do you feel that what we're doing here with this bill should go ahead unamended and as is?

[Bev Heim-Myers]

If we have the genetic non-discrimination act, whereby you cannot use genetic test information against an individual, and it criminalizes the behaviour, that is the deterrent. That is the protection. If it's just in the Human Rights Act, it's not a deterrent, and people would be open to discrimination in the family.

[The Chair, Liberal, Anthony Housefather]

The current draft of Bill S-201 says that a person can themselves consent to disclose, and by consenting to disclose, they are potentially impairing their family members.

I think what Mr. Cooper was asking was whether you recommend any amendment to that section.

[Bev Heim-Myers]

Do you want me to start?

I'm not a lawyer, so I'll put that on the table.

I think it's critically important to change the Canadian Human Rights Act. We've worked with Justice since 2010, and they've been very onside with making the Canadian Human Rights Act more explicit, so that there is no question and no grey area. That's very important, because that will filter down to the provinces, and provinces will take a lead and do that.

That's not the only important part of this bill. It's very important to have pan-Canada protection. It's very important that we don't have a patchwork. The issue with a patchwork approach, where at a pan-Canada level we don't have the same protection right across Canada, is that every province will do it differently; there will be holes in the legislation; and people will be disadvantaged and actually misled because of that. They won't know what their protections are.

It's critically important, in our opinion and in the opinion of the Canadian Coalition for Genetic Fairness, to have the pan-Canada bill, the genetic non-discrimination act, in conjunction with the clarity in the Canadian Human Rights Act, in the Labour Code, and in the provincial human rights acts. It's all necessary for all Canadians to be protected.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you, Mr. Chair, and thank you to the witnesses for appearing this afternoon.

Members of the committee received a statement from the Minister of Justice.

I don't know if you have had an opportunity to review that statement issued today. In the letter from the Minister of Justice, the minister states that the government supports the amendments to the Canadian Human Rights Act but objects to, in particular, the penalty provisions contained in Bill S-201 on the basis that they are inconsistent with the general approach that has been taken to other forms of discrimination in a human rights law context rather than a criminal law context.

I wonder if you might be able to comment on that observation by the minister.

[Clare Gibbons, Genetic Counsellor and Past President, Canadian Association of Genetic Counsellors]

Thank you, Mr. Chair and honourable members, for the opportunity for the Canadian Association of Genetic Counsellors to express its opinion on genetic discrimination and Bill S-201. This is a pressing issue, and CAGC would like to protect Canadians from genetic discrimination so that it no longer impacts their genetic test decisions.

When genetic counsellors offer genetic testing, we feel compelled to mention the possibility of genetic discrimination since many of us are aware of patients we or our colleagues have seen who have experienced genetic discrimination. The actual cases are few, but we cannot guarantee that the patient we are seeing will not be one of those few and, as a result, we must mention it to all of our patients.

Recently, a clinic was asked to include the possibility of genetic discrimination in its consent form for genetic testing because of this concern. Even though the number of cases may be small, the fear of potential genetic discrimination is frequent, and it is affecting Canadians' genetic test decisions and therefore their medical care.

Genetic testing has evolved from being able to look for specific genes to doing broad scanning of our genome, and with this there is an increased probability of finding something that could be used in a negative capacity.

There is also a trend toward preventive genetic testing. This means screening for genetic markers that people could use to help manage their health.

The future of genetic testing promises amazing advances, but with these advances there is also the increased potential for misuse of this information and for discrimination. Here are some examples. We recently had in our clinic a patient with colon cancer who was offered testing for something called Lynch syndrome. This was offered because Lynch syndrome has a higher risk not only for colon cancer but also for cancer of other organs, like stomach and liver. If we knew that this individual had Lynch syndrome, enhanced screening would be offered to them, and their close relatives could also be identified and screened. This person declined testing for Lynch syndrome, because they were concerned about genetic discrimination against their relatives.

We are also able to do genetic panels and sequencing of genes. When doing this, we may find DNA variants that are of unknown significance. These variants could mean that there is a problem with that gene and that person has the syndrome, but they could also be actually a benign variation in our DNA. We just don't have enough information right now to really be able to classify whether or not that person has the syndrome. Could this potentially be used against them because of that uncertainty? It is certainly a possibility.

Also, microarray testing and exome sequencing are a broad way of looking for genetic differences. One potential case would be of a woman who is offered prenatal testing because of unusual ultrasound findings. She would be offered this testing so we could determine the implications of those ultrasound findings and figure out the prognosis for her unborn child. That testing, though, could discover things like a neuropathy, early-onset Alzheimer's, or a predisposition to cancer. If one of those things is found, that would make that unborn fetus—and potentially one of the parents, who probably carries that genetic change as well—uninsurable.

It's a lot to put on a woman, who has to make difficult decisions about a pregnancy, to also consider this possibility, though small, while she is trying to make that decision. We do take measures to try to minimize the likelihood of finding these unexpected findings, but they could be found inadvertently, and we would have to explain this to her. It adds complexity to an already challenging case and the challenging decisions that she has to make.

For preventative genetics, they are looking at factors in genes that would maybe modify a person's health risk. One example is Factor V Leiden. This is a genetic change that's found in 3% to 8% of the Caucasian population, and carriers of this genetic variation have an increased risk of blood clots. Though there is increased risk of blood clots, there are things a person may be able to do to reduce that risk, for example being cautious about what medications are prescribed.

For instance, oral contraceptives would be inadvisable for someone who carries Factor V Leiden nor would sitting for long periods of time. You would want to move around to reduce that risk.

Could that person who finds out about Factor V Leiden, so that they can try to minimize the risk or choose what type of birth control they would use, have that used against them when they're applying for, let's say, travel insurance or disability insurance?

There are many more possibilities, and there are even ones that we cannot conceive of at this time because of the advances that are happening in genetics and where those may take us.

CAGC, or the Canadian Association of Genetic Counsellors, believes that legislation is needed to protect Canadians. Bill S-201 offers the most protection, and this bill would allow Canadians to be reassured that they will not experience genetic discrimination. It will allow patients to make decisions about genetic testing to optimize their health management without being influenced by the fear of genetic discrimination.

Thank you.

[Richard Marceau]

Thank you.

It is always a great pleasure for me to take part in the work of the Standing Committee on Justice and Human Rights. As you know, I spent several years sitting where you sit, as a member of this committee, as justice critic for the party I belonged to at the time.

That party as you know, is very protective of provincial prerogatives. Although I am no longer a member of any political party and have not been for several years, I remain sensitive to and respectful of provincial jurisdictions.

That is in fact what I would like to highlight today. It has been said that Bill S-201 is unconstitutional because it attacks civil law on contractual matters, principally as concerns insurance and the right to employment.

When we became aware of this, at the Centre for Israel and Jewish Affairs, we contacted representatives of 10 of the 13 Canadian provinces and territories. In fact, who is in a better position than the provinces and territories themselves to speak to the constitutionality issue? In the replies we received, none of the provinces or territories said that Bill S-201 posed some type of jurisdictional issue. Moreover, none of them said that the issue of genetic discrimination was not a matter of federal jurisdiction.

This consensus was strengthened by legal opinions, which you have surely read, from professor Bruce Ryder, of Osgoode Hall, who unless I am mistaken will be testifying here next week, as well as from professor Pierre Thibault of the University of Ottawa. The research I have done led me to adopt a position that is very similar to that of Bruce Ryder.

In my opinion, when one studies Bill S-201, the main question is this: what is the dominant characteristic of the bill? Is it that it puts in place interdictions, accompanied by sanctions, to grapple with a social ill, genetic discrimination, or is it rather that it regulates an industry, such as the insurance industry? In the first case, this is a matter of federal jurisdiction. If it is the second, then it is a matter of provincial jurisdiction.

Let's consider what Bill S-201 does and what it does not do.

Bill S-201 does not contain a licensing scheme or industry regulations. It contains prohibitions and penalties in line with criminal law. It does not target any particular industry or type of actor. The clear purpose of this bill is to address a significant social problem across Canada. By prohibiting and penalizing genetic discrimination, the Parliament of Canada is within its power.

Bill S-201 will encourage Canadians to get tested, unlocking tremendous, potentially life-saving health benefits. This is the objective of the legislation before you, and I submit to you that it is within the federal domain.

Of course, it may be true that employers and insurers are affected by Bill S-201. However, the fact that a bill may have repercussions on provincial matters of jurisdiction does not make it unconstitutional as such. We may legislate on genetic discrimination at both the federal and provincial levels.

As Professor Ryder noted, it's not uncommon to have overlapping laws in areas of shared jurisdiction, and it's often the role of the federal Parliament to show leadership and to set out some basic national standards. In fact, Bill S-201 has already started to do this. As was mentioned previously, there is now a bill in front of the Ontario legislature to ban genetic discrimination, which passed second reading with unanimous support.

In closing, Mr. Chair, I invite the members of the committee to support Bill S-201 and to vote in favour of it without amendment, and to report it to the House of Commons. In doing so, members of the committee and other members, you would be sending a strong message that there is no room for genetic discrimination in Canada in 2016.

Thank you.

[Noah Shack, Director of Policy, Centre for Israel and Jewish Affairs]

Thank you, Chair, and honourable committee members. I appreciate the opportunity to speak here today in support of Bill S-201.

The Centre for Israel and Jewish Affairs is the advocacy agent of the Jewish Federations of Canada, a national, non-profit, non-partisan organization representing the perspectives of 150,000 Jewish Canadians affiliated through local federations from coast to coast. Our mission is to improve the quality of Jewish life in Canada by advancing public policy interests of our vital community.

Enacting Bill S-201 could have a tremendous impact on the health of many Jewish Canadians. Jews of European descent are 10 times more likely than the general population to carry the BRCA genetic markers indicating a significantly elevated risk of breast and ovarian cancers. For women with these markers, this means up to an 85% chance of developing breast cancer and up to a 65% chance of developing ovarian cancer, compared to 12% and 1.8% respectively for the general population. Once tested, a patient can ensure proper screening and take preventative steps to radically reduce, if not eliminate, their cancer risk.

Unfortunately, too many, too often, refuse genetic testing due to fear of genetic discrimination. Those who do get tested are at risk of being penalized for being responsible.

This is the justice committee, so let me give you an example from a legal context. A friend and colleague of mine, an Ashkenazi Jewish woman, was advised to forgo genetic testing when she was beginning her legal career at a major Toronto law firm. She was warned that a BRCA marker would likely inhibit progress in her career, precluding her from being able to make partner in that firm. Also, it could possibly limit access to the insurance she would need to establish her own independent practice, if she chose to do so.

No Canadian should be forced to choose between their life and their livelihood.

While this experience is particularly concerning for the Jewish community, we're by no means the only group impacted. Others are increasingly susceptible to genetic discrimination as research progresses, whether they are of Scandinavian, South Asian, African, French Canadian, or first nations descent. It's not just minority groups that face this challenge. Genetic testing can be a lifeline for all Canadians. From rare disorders to cancer, diagnostic and treatment options are developing at an exponential rate. We've reached a point where the major barriers to these advances are no longer just scientific, they're legislative. Parliament can harness the full potential of these breakthroughs by ensuring that those who are tested do not fear or suffer from genetic discrimination.

With taxpayer dollars being wisely allocated to cutting-edge genetic research, the protections provided by Bill S-201 are essential to ensure a meaningful return on investment and to maximize the potential health benefits for all Canadians. Moving forward, genetic screening and subsequent treatment and lifestyle changes could conceivably help to prevent a variety of illnesses from requiring costly treatment at an acute stage.

Fortunately, there's broad cross-party support for Senator Cowan's initiative. During the 2015 federal election, CIJA organized a debate in Toronto, in which candidates from all three major parties participated. All the candidates pledged to make it illegal to discriminate based on the results of genetic testing, if their party were to form the government. Bill Morneau, now the Minister of Finance, who represented the Liberal Party at this debate, stated that the Liberals would make sure they introduced into Parliament, which they thought they could do with all-party support, a bill that would prevent insurance companies from using genetic testing or pre-existing conditions either to preclude someone from getting access to insurance or to price insurance so high that it wasn't accessible to them.

Of course, we're all here today because the House of Commons unanimously supported this bill and bringing it to committee.

Fundamentally, preventing genetic discrimination can help save lives. We encourage the enactment of Bill S-201 without delay.

[Bev Heim-Myers]

Thank you very much, Mr. Chair, and honourable members.

Thank you for inviting the Canadian Coalition for Genetic Fairness, and, indeed, all Canadians, to have their voice heard here today. I truly appreciate it.

I'm going to focus on three areas: the fear of and examples of genetic discrimination, the evidence-based research, and the impact of not protecting genetic test information.

Let's start with the stories.

A young mother expecting her second child was approved for life insurance. Before she received her policy, she found out that her own mother was diagnosed with breast cancer and was subsequently found to have the BRCA gene. This young mom notified her insurance company to let them know that she too wanted to be tested for the BRCA gene so that she could inform her health decisions going forward, and her insurance was rescinded.

A graduating chiropractor applied for life insurance so that she could practise after she graduated. She was initially denied because she was from a Huntington disease family until she proved through a genetic test that she in fact did not have the gene. She reluctantly had a genetic test and does not have the mutation, but the story continues. Five years later, when she was given the opportunity to buy into the practice, the insurance industry said she had to get another genetic test to prove she still did not have the genetic mutation for Huntington disease. Finally her physician stepped in and said, “This is a waste of health care dollars. She doesn't need another test”. However, then her family stepped in and said, “Please stop talking to the media, because we're now getting questions from our employers. Please stop telling them about your experience.”

In Toronto, Ontario, the landlord of a supportive housing site has been asking tenants to provide medical information, including genetic test information. The landlord has approached current tenants directly to ask for this information and is holding back other privileges, like using the common room, until they provide that information. It is unclear why the landlord is asking, but it clearly sets a very frightening precedent.

A gentleman from Ottawa in his fifties was recently diagnosed with frontotemporal dementia. He would like to participate in clinical trials to try to find answers for this disease. His children are in their twenties and are furious at him for even considering getting tested and participating in clinical trials, for the impact it may have on them down the line. This has created a division in the family at a time when he really needs support from his children.

A young man, who was upset at work one day after receiving genetic test results that he had the Huntington disease mutation—although he won't manifest for 20 years—was asked by his employer, “Why are you so upset today?” He told his employer that he had the gene mutation, that he'd be okay for 20 years, but he had to figure out his life. That was on a Friday. On Monday morning this young man went into work and was fired. The employer said he was fired because he was worried for his equipment. The young man was a web designer. To this day he's afraid to apply for another job, and he's 22 years old.

Yesterday, I received a note from an individual wanting to help and support the coalition. When I asked her if she herself had experienced genetic discrimination, she answered, “Thankfully, no, but I would like to move back to Canada and work in the field of genetics, which at this point in time is at a standstill until Canada protects genetic test information.”

Allowing genetic discrimination to occur creates a barrier to personalized medicine. Dr. Yvonne Bombard has published many papers on genetic discrimination, and the impact it has on behaviours. In a recent paper she found that 86% of people in the HD community fear genetic discrimination for themselves and their family members. Fifty per cent of them have experienced genetic discrimination.

In another paper focusing on personalized medicine, Dr. Bombard concludes, “Individuals' concern about genetic discrimination can create barriers to access to genetic services that may offer them important therapeutic or management opportunities, and can result in suboptimal care for those who undergo genetic testing under conditions of anonymity or aliases.”

In other words, genetic discrimination is a barrier to the health and well-being of people living in Canada because people do not seek out the information in order to make informed health decisions.

Pharmacogenetics is a science that can provide life-saving information, eliminate potential adverse drug reactions, and expedite healthy outcomes through the use of the most effective drugs for an individual. The challenge is clearly the barrier of genetic discrimination.

Recently a woman who survived breast cancer had an adverse reaction to tamoxifen, a maintenance drug taken after surviving breast cancer. After taking this drug, she developed a life-threatening pulmonary embolism due to the drug. She has three daughters. Her daughters want to know if they also have a sensitivity to tamoxifen, in case they need to take it one day. Their doctor advised against testing because they would open themselves up to genetic discrimination.

In a paper published in the U.K., R.G. Thomas concluded that there was great push-back from the insurance industry against protecting genetic test information because of a concern that people would top up insurance policies if they knew they may get a future disease.

That has not transpired. In fact, the U.K. Insurance Key Facts 2014 paper, published by the Association of British Insurers, describes the insurance industry as a U.K. success story, and total premium income is lower than in other countries.

The Office of the Privacy Commissioner commissioned two papers looking at the economic and actuarial impact of the insurance industry if they did not have access to genetic test information, and the conclusion was, “it is not clear that the collection and use of genetic test results by insurance companies is demonstrably necessary, effective, proportionate or the least intrusive means of achieving the industry's objective at this time.”

To date, Ontario has tabled Bill 30, and it unanimously passed at second reading. This is a non-discrimination bill in Ontario, and they've been working on it for about four years. This bill addresses adding genetic characteristics to the Ontario Human Rights Code, and it is acknowledged by the sponsor of the bill, MPP Mike Colle, that in order for Ontarians to be protected, Bill S-201 has to go through at the federal level in its entirety, and for this added impact at the Ontario level, by adding genetic characteristics to the Ontario Human Rights Code. This would avoid a patchwork approach. In every province we would have an overriding pan-Canada protection. People could move from Ontario to Manitoba, and they would still be protected. It's seems clear that as Ontario is acting, other provinces will follow to strengthen their human rights act.

These are exciting times in medical science, and yet Canadians cannot take advantage of advances because legislation has not caught up with science and technology. Young people already have access to genetic testing and reproductive options enabling them to make informed decisions before they have children and potentially pass on a genetic mutation. Many young people don't get the genetic tests that could inform reproductive decisions because they fear of genetic discrimination.

Canadians are not participating in clinical trials that necessitate a genetic test for fear of genetic discrimination against themselves and their children. This is a barrier to medical progress in Canada. Parents are making the excruciating decision not to have their children genetically tested in order to inform disease treatment, because they are afraid of genetic discrimination against other siblings in the family. The paper “Genetic discrimination: international perspectives” identifies 37 countries. Of those 37 countries, 16 have specific genetic non-discrimination legislation, and 28 of the 37 have also signed on to a state-led moratorium and have agreed not to use genetic test information. Canada is on neither of those lists.

The time is past due to pass robust legislation protecting genetic test information and allowing all people living in Canada fearless access to personal information about disease prevention, targeted treatment, and management. This can only lead to the increased health and well-being of all people living in Canada. If the government chooses to amend Bill S-201 and decrease its robust approach at this time, Canadians will continue to be disadvantaged.

Thank you very much for your time.

[The Chair, Liberal, Anthony Housefather]

We are going to reconvene the meeting of the Standing Committee on Justice and Human Rights studying Bill S-201, an act to prohibit and prevent genetic discrimination.

I'd like to welcome this group of witnesses to the committee. From the Canadian Coalition for Genetic Fairness, we have Bev Heim-Myers, who is the chair.

Welcome.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Suppose Bill S-201 is passed in its present form—and we've already had some indications from the provinces that they seem at most ambivalent about it—if you were tasked by the Department of Justice, by the federal government, to defend this bill against a provincial challenge, how would the Department of Justice defend the specific provisions in the first clauses?

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you, Mr. Chair. I really appreciate the appearance of both witnesses today. I will try to keep this as technical as possible.

I want to go on to the subject of federal criminal law power. We know that criminal law's main purpose is to look at a supposed evil, which may be directed at any kind of form, against any person or organization. If we enact legislation with the purpose of protecting vital public interests, an argument could be made that doing so falls within the jurisdiction of criminal law power.

If we look technically at the bill before us, Bill S-201, and examine the relevant clauses, are you able to tell this committee how federal criminal law power could technically fit within the direct prohibitions that exist in these clauses? It seems to me that a behaviour is being targeted and not really a direct contract. A contract could exist in any kind of business, but this seems to me to be the action and not the end result.

[Laurie Sargent]

On that point, obviously Senator Cowan and others have reached out, and the responses received to date have not indicated any significant concerns on their part.

Officials at the Department of Justice reached out in September to start discussions with them with respect to Bill S-201 and its various elements in a little bit more detail. We have not yet received responses.

I want to note, however, that it was clear from discussion that provinces and territories were very interested in the legislation. They could see that it had potential implications for their own human rights legislation, for their own regulation of the insurance industries, and of course for health care. While we weren't necessarily talking about concerns at that time, it seems very important that we speak with officials and ministers to ensure that everyone fully understands some of the implications of this legislation.

[Laurie Wright]

With respect to the Canada Labour Code, in terms of the detailed interaction between the two, I would refer you to the possibility of speaking to labour officials about the details of the Canada Labour Code. I can say generally that the concurrent changes to the Canadian Human Rights Act and to the Canada Labour Code do appear to create two systems that would operate to effectively be looking at the same kinds of complaints and issues at the same time.

With respect to the Criminal Code portion, the criminal nature of the genetic non-discrimination act, I think it would be solely, as another honourable member already mentioned, a question of whether the types of penalties match up with those for offences of a similar kind of gravity that are already in the Criminal Code.

[Laurie Wright]

Certainly, the act stipulates that a prison term of up to 12 months could be imposed on summary conviction. By way of general reference, the Criminal Code for summary conviction offences has a maximum term not exceeding six months.

Also, with respect to both the possible term of imprisonment and the fines that are available under the genetic non-discrimination act, they would line up with much more serious penalties that you would see for offences in the Criminal Code, such as counterfeiting or those kinds of things. They're certainly on the high end.

[Laurie Sargent]

Thank you very much.

As you know, we're here to provide the technical views. From our perspective, we're not going to speak to the term “genetic characteristics” as it is used in relation to the genetic non-discrimination act. We're going to leave the statement to speak to that.

As we understand it, from the perspective of the Canadian Human Rights Act, that definition won't be imported into the CHRA, so, as with so many other grounds in the CHRA, the terms will be left to be defined by the Canadian Human Rights Commission and others as they interpret the legislation.

That would be our understanding of the bill, anyway. Thank you.

[The Chair, Liberal, Anthony Housefather]

I'd like to bring this meeting of the Standing Committee on Justice and Human Rights to order as we recommence our study on Bill S-201, an act to prohibit and prevent genetic discrimination.

I'd like to welcome today, as our witnesses from the Department of Justice, Laurie Wright, who is the assistant deputy minister, and Laurie Sargent, who is the deputy director general and general counsel, in the human rights law sector, public law and legislative services sector.

Welcome. By the way, I'm always so impressed by this title. It is the longest title I have ever seen.

[Iqra Khalid, Liberal, Mississauga—Erin Mills, ON]

Thank you, ladies and gentlemen, for coming in. I have two questions—basic ones, I hope.

The current Bill S-201 doesn't define what genetic discrimination is. It's my understanding that a previous version of the bill did define it and that the Human Rights Commission had recommended that the definition be removed and that it be left to the tribunal and to the courts to decide how to interpret it.

My question is, why is that? Secondly, would it be beneficial at all or would it be detrimental if parliamentarians were to set a baseline from which courts, tribunals, and in reality our provinces could work with respect to determining what genetic discrimination means?

[Marie-Claude Landry, Chief Commissioner, Canadian Human Rights Commission]

Merci, Mr. Chair, honourable members.

Thank you for inviting the Canadian Human Rights Commission to speak before your committee on Bill S-201, an act to prohibit and prevent genetic discrimination.

I would like to introduce my colleagues, Fiona Keith, counsel for the commission and Marcella Daye, senior policy adviser. We would like to leave the committee with three main messages today.

First, we support Bill S-201 and we strongly support adding the ground of “genetic characteristics” to the Canadian Human Rights Act. Second, while the change to the CHRA would be a positive step, it cannot alone address all concerns surrounding the use of genetic information. Third, if Parliament adopts robust, comprehensive, and forward-thinking legislation to regulate the use of genetic information, it would make Canada a world leader in this emerging human rights issue. Before I elaborate on those three points, I'll speak briefly about the current context of genetic discrimination and human rights law in Canada.

Parliament designed the Canadian Human Rights Act in 1977 to promote equality and to protect Canadians from discrimination based on grounds such as sex, age, disability, and race. Canada's provinces and territories all have similar human rights laws. Through the years, our human rights laws have evolved to keep pace with social change and with technological advances. Genetic research holds great promise and is developing quickly. It has inspired new methods of diagnosis and treatment. Some believe it will revolutionize medicine and health. But as Parliament has been examining Bill S-201, we have learned that some individuals choose to avoid genetic testing out of fear. They fear that the very tests meant to help them may one day be used against them or their children.

People are afraid of discrimination by employers, by schools, or by insurance companies because of what their genes may say about them. In some cases, parents have to decide whether to test their child, knowing that the child's genetic information will follow them into adulthood, and could negatively affect them later in life. A test that could help save someone's life should not be a calculated risk. The scope of information that genetic testing can reveal about us now and in the future is extraordinary, and it goes well beyond our health information.

In the future, these tests could answer even more questions. What is my indigenous lineage? Do I have a genetic propensity to be anxious, a good athlete, or a natural leader? Without regulation the vast information contained in our genes could be used, shared, or accessed without our knowledge. The regulation of genetic information is an emerging area of law that remains virtually uncharted. Other jurisdictions like Ontario are considering legislation. But across Canada, jurisprudence in this area is almost non-existent. Our rights in this area are not clear.

Last February I gave my first parliamentary appearance as chief commissioner of the Canadian Human Rights Commission. I spoke on this very issue and this bill. At that time, I told the Senate committee that the commission supports adding the ground of “genetic characteristics” to the Canadian Human Rights Act. We see this legislative change as an important and positive step towards better protecting people in Canada from genetic discrimination.

As it stands today, the commission has the authority under our act to accept discrimination complaints regarding genetic characteristics only, and only if the complaint is linked to another ground such as disability.

Adding the ground of “genetic characteristics” to our act will allow people to file these complaints without having to link it to another ground. It will make it clear to people in Canada that they have a right to be treated equally regardless of their genetic characteristics and regardless of whether they choose to access genetic testing or share the results.

This brings me to my second point. While changing the Canadian Human Rights Act will be a positive step for human rights, it cannot address all the concerns surrounding genetic discrimination. Other stakeholders and experts from across Canada agree. There will still be a clear need to address the very real and the very serious fears of discrimination raised during the Senate debate on Bill S-201, fears about test results being used against us and fears for our children. We believe that in order to properly address these concerns it is going to take a concerted national approach.

This brings me to my third and final point. In order to prevent harm and keep people in Canada safe, robust, and forward thinking, comprehensive laws are necessary. Doing so will make Canada a world leader in this emerging issue. We encourage the federal government to take the lead, to pass robust national legislation, to meet with provincial and territorial governments to determine how best to implement nationwide protections against genetic discrimination, and to consult with stakeholder groups and human rights commissions across Canada. We believe this concerted national approach is the best way to ensure that Canada's human rights protections against genetic discrimination are robust, forward thinking, and comprehensive.

To conclude, I believe genetic information and genetic tests are meant to help us. But without adequate human rights protections and regulation of this information, genetic information could actually do more harm than good. Taking a test that could help save one's life should not be a calculated risk.

To conclude, taking a test that could help save one's life should not in any way raise another risk. The analysis of genetic information is meant to help us and not hurt us.

I want to thank you very much, and with my colleague I'm available for questions.

[James S. Cowan, Senator, Lib., Senate]

Thank you very much, Chair, and thank you, members of the committee, for allowing me to appear. I thank my friend, Rob, for most of what he said. The crack about being long in the tooth, I'd ask him to reconsider, but the rest of it, I appreciate.

I've circulated a statement that you can have a look at, at your leisure, so I won't cover all of it in the few minutes that are available today, but I would be happy to return to it in the question period. I want to get, really, to the essence of it. There are some concerns that have been expressed about the bill and I want to address those.

We know that this bill is strongly opposed by the insurance industry. They now have access to genetic test information and they, understandably, don't want to relinquish that access. They say terrible things will happen to the industry if this bill passes. I understand their concerns, but there are many countries around the world, as you know, which have prohibitions in place like those contained in Bill S-201, and the insurance industry in those countries continues and does just fine.

I hope you'll hear from the Privacy Commissioner of Canada. His office commissioned two studies, which concluded—and Rob alluded to this—“At the present time, and in the near future, the impact of a ban on the use of genetic information by the life and health insurance industry would not have a significant impact on insurers and the efficient operation of insurance markets.” Earlier this year, when the Privacy Commissioner appeared before the Senate in its study of this bill, he confirmed that his office stands by that conclusion.

While I understand the concerns of the insurance industry, I don't share them. When I balance the concerns of the insurance industry against the potential health benefits for Canadians of genetic testing without fear of discrimination, my choice is clear.

When Senator Ted Kennedy sponsored GINA, which is the American federal law against genetic discrimination, he hailed it as the first major new civil rights law of the new century. He said the bill recognizes that “discrimination based on a person's genetic identity is just as unacceptable as discrimination on the basis of race and religion.” I agree.

Bill S-201says that it's not acceptable to put someone in a position where they must hand over their most personal information, information about their DNA. We have criminal penalties if someone steals a car, a computer, or a piece of jewellery. Six years ago, Parliament passed an anti-spam law, which imposed penalties of up to $10 million for sending unwanted email. If we're prepared to legislate to prohibit sending unwanted emails, then I believe we should be prepared to prohibit unwanted access to one's genes.

I understand from the speeches at second reading and from my conversations with others that the government supports amendments to the Human Rights Act but opposes everything else in my bill; that, in fact, there is an intention to propose amendments to delete all of the provisions relating to the Canada Labour Code and to the genetic non-discrimination act.

I am told that the concern is constitutional, that some lawyers believe that the provisions in the genetic non-discrimination act would fall within provincial, not federal, legislative authority. This issue was explored in detail when the bill was before the Senate. I know that you are planning to hear from a number of distinguished scholars, including Peter Hogg and Professor Bruce Ryder, who are pre-eminent constitutional authorities—and I am not one of those. Just let me say that I take issues of constitutionality very seriously. I'm satisfied, based upon discussions I've had with eminent constitutional authorities in this country, as well as our own Senate Law Clerk and Parliamentary Counsel, that Bill S-201, including the proposed genetic non-discrimination act, is constitutional as a valid exercise of the federal criminal law power and it, therefore, falls well within the legislative authority of our Parliament.

There's been a suggestion, as well, that before we proceed, the provinces and territories need to be consulted. In fact, all the provinces and territories have been consulted about this bill, not once, but twice. Last December and January, I wrote to all the ministers of health in the provinces and territories and then, in February, the Senate Human Rights Committee, which was the committee studying this bill, wrote to all the provincial and territorial ministers of justice.

In total, we received replies from nine provinces and territories. Not one raised any objection or problem with the bill, either from a policy aspect or from a constitutional or jurisdictional point of view. Indeed, several provinces expressed strong support for the bill. I have now met or spoken with cabinet ministers in three provinces. Not one has raised any constitutional or jurisdictional concerns or any policy concerns. My strong impression is that this is an area where the provinces recognize the need for a uniform, national regime in the form of national legislation.

There was a meeting, just last month, of federal, provincial, and territorial justice ministers in my home province of Nova Scotia. I spoke with the justice minister from Nova Scotia, who happened to be the chair of that meeting. She said that no one raised this bill—not the federal Minister of Justice, nor any provincial or territorial minister of justice. We've seen other situations, where provinces have come forward to express constitutional and policy concerns about federal legislation, including private members' bills. We know about Bill C-377, which would be repealed by Bill C-4, which is now before the Senate. Seven provinces, in that case, sent submissions to the Senate saying that the bill was unconstitutional. Provincial governments, I suggest to you, are not shy about expressing themselves about these matters, but I've heard nothing from any province or territory opposing Bill S-201. As far as I know, no one else has either.

That's not surprising. Canadians need a national solution. They need to know that if they have a genetic test at one point in their lives, they need not worry that at some later time they might move to another part of the country where the rules could be different. They need to know that they will be protected from coast to coast to coast, no matter where they live.

I also want to address the proposal that the bill be amended to delete everything but the changes to the Canadian Human Rights Act. As Rob said, the Human Rights Act is important, but it is a law of limited application, applying only to certain sectors. For example, it has no application to the insurance industry, because the insurance industry is regulated at a provincial level. This came up, as you might expect, during the Senate hearings on Bill S-201. Let me read to you from the hearing, when the then-acting Canadian Human Rights commissioner testified in response to a question from my colleague Senator Eggleton.

Senator Eggleton said:

[W]hat would you do if somebody came to you with a complaint of discrimination on the basis of insurance that was denied them, under the current law?

The acting commissioner said:

Under the current law we do not have jurisdiction over the insurance industry. It's federally regulated private sector companies, so as I say transportation, telecommunications, banking industry, but not insurance companies.

In other words, you would be protected as long as you experienced genetic discrimination from your bank or your airline, but that's all. The bottom line is that, if the bill only amends the Canadian Human Rights Act, none of us could responsibly tell Canadians they can feel free to have genetic testing without fear of genetic discrimination, because that would not be the case. We would not have prohibited and prevented genetic discrimination, as the title of the bill says. We would have said, genetic discrimination is unacceptable in certain situations, but perfectly acceptable in others.

No one knows where the future lies, and again, Rob refers to this. No one knows what they will be doing in a few years or even months. This kind of limited protection would not be real protection. Indeed, I would argue, and this has been said to me by representatives of health organizations, that passing such a bill would be dangerous, in that Canadians would think they are protected—after all, Parliament has passed a law against genetic discrimination—but if they did go out and have a genetic test, they, in fact, could well encounter genetic discrimination, and there would be nothing anyone could do about it.

Mr. Oliphant has eloquently described this bill as a three-legged stool. I agree with that analogy. I have every confidence that all three legs of that stool will remain standing, that the whole bill will be found to be a valid exercise of the federal criminal law power. As I've said, all the provinces and territories have known about this bill for some time, and no one, not one person, has raised an objection of any kind.

Will there be a constitutional challenge? Perhaps. We all know that the insurance industry, as I said at the beginning, strongly opposes this bill, and they have deep pockets to launch such a challenge. However, as Professor Ryder told the Senate committee, and probably will tell you as well, “There will always be legal debate—we don't work in the realm of certainty—but I think you can work within the realm of confidence here.”

I'll conclude with a quote from Professor Ryder:

I am the sort of person who will say that it is one of your most important responsibilities to ensure that the legislation you vote in favour of is constitutional. I want to say, in this case, that I am very confident, and I believe it would be the consensus view of other constitutional experts, as well, that this bill is constitutional. ...I don't think you should be too concerned about the risk of unconstitutionality, because this seems to me to be very solidly within Parliament's jurisdiction.

I'll do my best to answer any questions in the course of the time that we have available.

Thank you very much for your attention.

[Rob Oliphant, Liberal, Don Valley West, ON]

Thank you, Mr. Chair. I will begin the presentation.

Thank you, Mr. Chair and all the members of the committee, for this opportunity to appear before you along with my friend and colleague Senator Cowan, the sponsor of the bill in the Senate.

It's funny to be sitting at this end of the table. It's a great privilege, and I'm reminded, as the chair of another committee, of what a great opportunity it is to be a witness before a parliamentary committee, so thank you.

I was very pleased and a little surprised when the House of Commons voted unanimously in favour of Bill S-201 and to send it here for further study. I did expect it to pass, but I was particularly pleased to have support from all sides and all corners of the House, including members of every party and the independents, including the Bloc Québécois and the Green Party.

The fact that it passed unanimously in the House and Senate tells me that the groups, the individuals, the patients, and the geneticists, the people in Canadian society who have been arguing for this bill and for genetic protection, have made their case and have made it well, and senators and members of Parliament have had an education in that process, so I'm not going to dwell particularly today on all the policy issues, though we can get into some of that.

I particularly chose that this bill would come to this committee for a reason. I sensed that the health committee would understand very intuitively the importance of the bill and the way medicine is changing in the 21st century, and they would get that very quickly; however, this is a bill that does pass a law. It not only amends two laws but it creates a new act, and I think this is an appropriate committee to actually get into the nature of discrimination and into the nature of the way we develop laws in this House and in this country.

I want to take a moment to thank in particular Bev Heim-Myers from the Canadian Coalition for Genetic Fairness, who has the presidency of the Huntington Society of Canada, and her team, which has brought together a wide collection of health charities and patient groups, as well as others in civil society—the CIJA, for instance—and other groups that have come together to educate Canadians and to make sure this bill is passed.

This bill is about changing the way medicine is done in Canada. Twentieth-century medicine was a view that we had on the way we were doing both diagnostic and corrective medicine. In the 21st century, with the discovery of the human genome, we have a radically new way of having medicine that is very much targeted.

For example, this past summer, the gene for metastatic fast-moving prostate cancer in men was discovered in about 80% of the cases. My father died of prostate cancer after a 20-year journey. His friend and colleague died after 18 months. For a long time, researchers have been looking at different cancers and understanding it in that way. This summer, there was a radical shift in looking at cancer and understanding that the genetic makeup of one person is different from another person; it's not necessarily the cancers that were different. This hasn't explained it completely, and there's not 100% certainty about it, but it's an inkling for further research and for changing the way that each of us will have our own health taken care of, as well as what we can do for our constituents.

I don't, however, want to overestimate the genetic factors in disease. That would, I think, also be damaging to our shared understanding of the new world of 21st century medicine. There is mounting evidence that within biology and biochemical sciences, genetics is only predictive in about 5% of chronic illnesses or disease. In fact, 90% to 95% of illnesses are shaped by our environment and by our lifestyle and other things. For us to be moving the needle too far on this is also of concern, in that we don't want to say that because someone has a genetic makeup, they are certain of getting a disease. That's just not the case. It is a marker. It is a helper for a geneticist, a physician, or a clinician, but it is not the end of the story for anyone who has that marker. Some research by opponents of this bill, I think, have not understood that and not taken that into account in their tables.

Bill S-201 has three components, each of them essential to fight discrimination, similar to the legs of a stool that has just three legs. By order of importance, they are: the Genetic Non-Discrimination Act, which would prohibit all forms of genetic discrimination, whether based on DNA or RNA; amendments to the Canada Labour Code; and amendments to the Canadian Human Rights Act. Each component is essential. None of the three components can be removed from the bill, just as we cannot take away one or two legs of a stool and still be able to sit on it.

The first leg of that stool is the creation of a new statute, the genetic non-discrimination act. This act would make it a criminal offence for a service provider or anyone entering into a contract with a person to require or compel a person to take a genetic test or to disclose the results of a genetic test.

It would also make it a criminal offence for a service provider or anyone entering into a contract with a person to collect, use, or disclose a person's genetic test results without prior consent. There would be exceptions, of course, for health care practitioners and research.

The bill sets out criminal penalties that are, I would note, strong, but they are maximum, not minimum, sentences. This is a guideline. It stresses the importance of this as a human right.

The bill states in black and white that society condemns genetic discrimination. It is not acceptable and will not be tolerated. The criminal sanctions in the bill are high in order to serve as an effective deterrent. The bill does not target any particular sector or industry. It focuses on reprehensible behaviour, which is specifically defines, and legally protects the public against it.

This new act would apply to everyone who commits a prohibited act.

The second part, the second leg of the stool, consists of changes to the Canada Labour Code. It sets up a complaint procedure for those employees who work in federally regulated industries. It's part of the change about government being a good employer.

The third, which I think is important but not as important as the first, is an amendment to the Canadian Human Rights Act, namely, the insertion of the words “genetic characteristics” into that act. Some have asked whether that alone would be sufficient, and I will argue that it would not be sufficient. I have been a member of a human rights commission. I have been a chair of a human rights commission. The onus in a human rights complaint is put on the complainant. It's on the patient, who may actually be struggling and may not have the financial resources. The act would ensure that the crown was acting on behalf of the population to ensure that we have strong deterrents to this form of discrimination, and it would make it fundamentally important for all Canadians to understand it.

You'll be hearing from groups in the insurance industry who are concerned about this. We will draw attention to the Privacy Commissioner's report that the insurance industry does not need to worry in the short or medium term. We understand that. I think we would be open to amendments at the committee if you wanted to put in some kind of a review over three years or five years, whatever is legislatively appropriate, to ensure that this won't in fact change the nature of the insurance industry.

We're of the strong belief that having the best human health information will safeguard Canadians' health, will encourage them in their lifestyle issues, in their environmental factors, and in co-determinants, to have the best health outcomes possible. In fact, we think this will help the insurance industry. People like you and me will pay our premiums for a longer period of time, and will ensure that we have the best health outcomes, and the insurance industry, like the other countries in the world that have this kind of protection, will not face an adverse reaction.

I look forward to your questions. I want to thank you for considering the bill, and also, in particular, end by thanking Senator Cowan, who is getting long in the tooth but is still eager, engaged, and really quite wonderful at this. When he started this process, there were just over 2,000 genetic tests, and in just a few years, there are now close to 38,000 genetic tests. He has shepherded this bill, brought it to different iterations, and has taken it through the Senate to get unanimous consent. He has offered it to me—I'm the custodial parent of this bill, and it's a great privilege to work with him in our adoptive procedure.

Thank you, Senator Cowan.

[The Chair, Liberal, Anthony Housefather]

Ladies and gentlemen, we're all here.

The meeting is called to order.

It's a great pleasure to welcome all of you to this meeting of the Standing Committee on Justice and Human Rights, where we will be commencing our study on Bill S-201, an act to prohibit and prevent genetic discrimination.

It is a great pleasure to welcome the Senate sponsor of the bill, Senator James Cowan.

Welcome, Senator Cowan.

The House sponsor of the bill is Robert Oliphant.

Welcome, Mr. Oliphant.

We've also had the kind agreement of all the members of the panel to appear together to allow the committee to pose more questions to all of them.

I'd also like to welcome, from the Canadian Human Rights Commission, Marie-Claude Landry, the chief commissioner.

Welcome, Ms. Landry. It is a great pleasure to welcome you here today.

Welcome also to Fiona Keith, counsel, human rights protection branch, and Marcella Daye, senior policy adviser, human rights promotion branch.

Thank you so much to all of you for appearing.

I'm going to turn the floor over to Mr. Oliphant and Senator Cowan, whoever wishes to go first.

Mr. Oliphant.

Genetic Non-Discrimination Act

[The Speaker, Liberal, Geoff Regan]

The House will now proceed to the taking of the deferred division at second reading of Bill S-201 under private members' business.

The House resumed from October 25 consideration of the motion that Bill S-201, An Act to prohibit and prevent genetic discrimination, be read the second time and referred to a committee.

[Rob Oliphant, Liberal, Don Valley West, ON]

Mr. Speaker, I want to do two things in these closing minutes, and the first is to thank colleagues from both sides of the House for their comments, their speeches, and their very strong defence of the bill. There are few opportunities we have in the House to actually share common concerns and do something for all Canadians. Some of this is happening on Bill S-201, and I want to commend hon. members.

I also want to thank the members who spoke to me personally about the bill. Men and women have come to me with stories about themselves, their children, and their parents, particularly about illnesses they have or concerns they have faced in their own lives and have not felt free to tell others about because of the fear of genetic discrimination. They know who they are, and their stories will be kept entrusted with me, and I thank them for that privilege. I hope the bill will be dedicated to each of them and every Canadian who fears the possibility of discrimination if they get a genetic test.

I want to also thank Senator Cowan, from the other place, as has been said, and Barb Kagedan, his wonderful assistant, who has shepherded the bill, not just these months but for many years, and has brought passion and intelligence to this House from the other place and has made my work much easier.

Senator Cowan and Bev Heim-Myers, the president of the Huntington Society of Canada, recently received a very prestigious award from the American Society of Human Genetics. Bev is also the chair of the Canadian Coalition for Genetic Fairness. They have worked together as health groups, patient organizations, and charities to ensure that parliamentarians can learn, as one of my hon. colleagues said, things we did not know before we came here.

This tribute today is really in their name. It is something they have done and brought to the attention of this House through the Senate, and I think we owe them all a strong vote of thanks. That is the first thing I want to do.

The second thing I want to do is remind the House of the integrity of the bill. There are three parts to it: the genetic non-discrimination act, changes to labour legislation, and changes to the Canadian Human Rights Act. Each part of it is essential to ensure that the bill will be enacted in a way that Canadians can trust that they can get a genetic test to ensure that their health care is absolutely optimum.

Medicine is changing. Twenty-first century medicine is about genetic medicine. It is called targeted medicine, sometimes personalized medicine. It is the nature of medical practice as we know it today. It is revolutionary.

We were asked why Canada lags behind in this, and I think the reason is that we have messed around with a concern about provincial and federal jurisdiction. This House has the opportunity to act and to act strongly and clearly. We should give the provinces the opportunity to comment on the bill and act with them and on behalf of all Canadians to ensure that this act has the kind of teeth it needs to protect them in the most vulnerable place: their health, their existence.

There are parts of this job that we love and parts that we do not love as much. The part I love the most is that we have the opportunity to actually affect Canadians' lives. We have a moment in this House, with this act, to make a change that can actually change the lives of millions of Canadians, who can, with trust and confidence, go to their physicians and get the tests they need so that their clinicians, the practitioners who help them, can have the very best tools.

One of the great privileges I have had is to meet with Dr. Ronald Cohn, Stephen Scherer, and other researchers across this country from coast to coast to coast. They are aching for a piece of legislation so that they can help their patients in ways they are concerned they are not able to do today.

I thank the House for considering the bill. I look forward to tomorrow. I hope members stand and support it and make Canadians a healthier population.

[Luc Berthold, Conservative, Mégantic—L'Érable, QC]

Mr. Speaker, I too am pleased to rise in the House to speak to Bill S-201, an act to prohibit and prevent genetic discrimination.

The beauty of my work as a member of the House of Commons is that I have the opportunity to dig into a number of topics that affect Canadians and discover issues that I barely knew existed in my riding because no one had taken the time to inform me about them.

Bill S-201, introduced by Senator Cowan, opened my eyes to the very real dangers of genetic discrimination in Canada. I am pleased to share my thoughts on Bill S-201 with my colleagues.

During my research, I discovered that Canadians are not really legally protected from genetic discrimination. Across the country, people run the risk of being negatively impacted by genetic tests revealing potential genetic abnormalities. However, these tests are absolutely necessary. They can save lives. Thanks to modern medicine, these tests can forecast diseases a person might develop later on.

On the other hand, some people have a strong desire to know the risks, because there could be financial risks involved when it comes to the protection provided by insurance and all those other kinds of protection currently available to Canadians.

Do people have to choose between their money or their life? I think the answer is obvious: no one should ever have to make that choice. In my view, Bill S-201 responds perfectly to this concern.

Should someone who has a genetic disease have to pay higher insurance premiums? Should they be denied access to employment? The answer to those questions is no.

As I mentioned, we are all potential victims. There are nearly 6,000 genetic abnormalities that could cause diseases, and any one of us could be affected. Every month scientists discover new abnormalities that could affect our health. If there is no legislation in place, it could increase the cost of insurance or limit employment opportunities.

I will be quoting Ronald Cohn a few times in my speech, because I think he is a real expert on this matter. He treats children. I think we should listen to him.

Ronald Cohn, paediatrician-in-chief at The Hospital for Sick Children in Toronto, said that genetic discrimination is a real problem that will only grow with advances in technology.

The rate at which our doctors and researchers will find cures for our diseases will keep pace with the rate of technological advances. We hope these people work as quickly as possible to prevent others from becoming ill and in order to be able to treat people.

Unfortunately, as the rate of medical advances increases, some are eager to obtain these results in order to save money on the backs of the individuals who could develop these diseases in the future.

Another argument in favour of Bill S-201 pertains to the discrimination that other specific groups could be subjected to if certain ill intentioned people were to have access to test results.

Quebeckers in particular could be especially vulnerable because they lack genetic diversity. Researchers at the Centre de recherche du Centre hospitalier universitaire Sainte-Justine and the University of Montreal have shown that old stock Quebeckers for the most part are descendants of a limited demographic of only 8,500 French colonists. Today, there are several million Quebeckers. With respect to that group, if problems were discovered among the 8,500 colonists, today they are found in hundreds of thousands of Quebeckers.

Some regions of Quebec and their populations were isolated for approximately 400 years. The region of Saguenay—Lac-Saint-Jean is a striking example. In several other Quebec regions, we see the effect of this concentration of old stock Quebeckers, who are dealing with rare diseases inherited from their ancestors.

That is also the case in Newfoundland and Labrador. We are seeing the same phenomenon as in the Saguenay—Lac-Saint-Jean region. Remote locations and a lack of outside immigration for generations have also produced this sort of effect on the population. It is called the founder effect. It has created a number of genetic mutations that have led to hereditary diseases in communities in Newfoundland and Labrador and Saguenay—Lac-Saint-Jean.

The deadliest disease is arrhythmogenic right ventricular dysplasia. Speaking of subjects I never thought I would raise in the House, this is one of them. This inherited heart disease can result in sudden cardiac death. There are 64 specific families in Newfoundland and Labrador that are carriers of this disease and 80% of the men in these families with what might be called the “malevolent gene” will die before the age of 50. Many people show no symptoms of the disease.

If an insurance company sees test results that show that these people carry this “malevolent gene”, would they sell them life insurance? That is a question we need to answer because, if these companies are allowed to use genetic testing, they may decide not to sell these people life insurance. People who could potentially avoid dying before the age of 50 by taking the test may not want to take it for fear that their insurance company might get a hold of the results.

Once again, we are left with an illogical and immoral choice. It is not right that people should have to choose between doing everything they can to prevent their potential death and making sure that their family is taken care of financially after they are gone. However, that is the dilemma that these people are facing. Would an employer offer a long-term position to someone with such a disease? That is another question we need to ask.

Some first nations communities in northern British Columbia are genetically predisposed to certain serious illnesses. For example, some people in those communities are 20 times more likely than the average Canadian to have a genetic syndrome that manifests as a terrible hereditary heart disease.

Those are the dangers we are facing right now as a people and as Canadians because our laws do not provide for that kind of protection. Between 10% and 30% of patients refuse genetic testing because they fear genetic discrimination against themselves or their family members. Mr. Boudria, a former Liberal minister who now speaks on behalf of Ovarian Cancer Canada, hit the nail on the head with the following statement:

Medically, the current rules are not good enough. Some people would rather not have genetic testing done so that they will not be questioned.... The test could save their lives. We know that cancer is easier to cure if caught early.

That is why we must take action.

In closing, I would like to talk about other circumstances under which people refuse. Many families refuse to have their children tested because they fear the consequences with respect to insurance. Dr. Ronald Cohn, paediatrician-in-chief at The Hospital for Sick Children in Toronto, said the following:

Finding yourself in a situation where you offer somebody a test and then they say “I would love to do it but I'm afraid to,” it's somewhat paralyzing.

It is incredible.

Canada is lagging behind. We are the only G7 country that does not have legislation against genetic discrimination. Our neighbours to the south adopted similar legislation almost 10 years ago. France and Great Britain were among the first to adopt or amend their legislation nearly 20 years ago.

Elsewhere in the world, 50 or so countries regulate how genetic data can be used, and 35 of those countries explicitly prohibit genetic discrimination in employment. What is more, in 1997, the United Nations Educational, Scientific and Cultural Organization advocated for all states to provide protection from discrimination based on genetic data or genetic characteristics.

In closing, we support this bill because it is essential. I would also like to acknowledge the excellent collaboration of a participant in the parliamentary internship programme, Jeanette Carney. She provided excellent research for drafting these notes. I wanted to acknowledge that before you, Mr. Speaker, and before my colleagues.

[Peter Schiefke, Liberal, Parliamentary Secretary to the Prime Minister (Youth)]

Mr. Speaker, I am pleased to rise in this chamber today to speak in support of Bill S-201, the genetic non-discrimination act, which passed the committee and third reading stages in the other place on April 14.

First put forward by the Honourable James Cowan, senator for Nova Scotia, and moved in the House of Commons by my colleague for Don Valley West, Bill S-201 would allow one of Canada's most important and core values to become entrenched in our laws.

As Canadians, we pride ourselves on our charter and human rights because they provide every single Canadian with equal protections from various forms of discrimination and disadvantage. Unfortunately, to date, we have lagged behind on the key issue of genetic discrimination, leaving thousands of Canadians vulnerable because of their very essence, their DNA.

The Office of the Privacy Commissioner of Canada produced a report in March of 2012 on the potential effects of such a bill. It made the case that one's genetic makeup represents, in the most personal of ways, “one's very identity”. If we, as a nation of equals, value the protection of individuals based on their gender, sex, or religion, the question is this. How can we not seek to protect the very basis of their being? The short answer is that we cannot. I believe strongly that we, as the House and the entire body of Parliament, recognize that reality to be a fact.

On at least three separate occasions has such a bill made its way through the committee structure, including receiving extensive praise from the Senate Standing Community on Human Rights, and three times has the gap that exists in our rights and protections failed to be bridged. Finally, we have an opportunity to change that.

I am proud to be part of a government that values and respects science, scientists, and the scientific community. That is why our government abolished rules that placed restrictions on scientists' work and prohibited them from talking about their work, as important as it is.

If we want to ensure a more prosperous future for Canadians, we have to pay attention to science and make sure that laws designed to protect us evolve in step with technology.

Canada is a society that values freedom and privacy. Giving employers, insurance companies, or any other group the power to use people's most private information against them is not in keeping with Canadian values.

I talked about the speed of scientific progress. From 2003 to 2016, the number of genetic tests available increased from 100 to 33,000. These tests are key to, for example, determining early on whether a woman is predisposed to developing breast cancer and thereby improving treatment success rates.

I myself have had cancer twice, and as a survivor, I am well aware of the positive impact this type of technology has had and can have moving forward, not just for me, not just for the citizens of my riding of Vaudreuil—Soulanges, but for Canadians from coast to coast to coast. However, without proper legislation, this reality is a double-edged sword. Billions of dollars in genome research has no doubt saved tens of thousands of Canadians affected by a variety of illnesses, because we can now detect them in ways we could not before and, therefore, treat them better than we could before. Indeed, for diseases such as cancer, time is everything. Time is life. It also means that there are about 33,000 new ways for people to try to seep into the personal lives of individuals, ultimately giving them the power to possibly fire, overcharge, or discriminate against them.

Should Bill S-201 not pass through this chamber, Canada may face serious public health challenges, where Canadians, concerned about being treated unfairly due to the fact that their employers or insurers require them to disclose the results of genetic testing, would no longer seek such beneficial testing. The consequences could be that thousands of individuals may never know their chances of developing certain illnesses because they fear the consequences of discrimination more.

We can live in a country that proudly respects science and the advances the scientific community has given us while also protecting the rights and freedoms we as Canadians so proudly enjoy. That is exactly what Bill S-201 seeks to accomplish.

At its core, this bill addresses an important change that needs to be made to both the Canada Labour Code and the Canadian Human Rights Act. It is not, however, without its challenges.

We are a government of collaboration, committed to engaging with our provincial and territorial counterparts to ensure that certain parts of this bill do not interfere with their jurisdictions. We must, nonetheless, remain committed to supporting the genetic non-discrimination act after ensuring that the rights of the provinces and territories are safeguarded and used to effectively promote the same principles that this bill puts forward. It is my hope that the chamber can see the genetic non-discrimination act for what it is, a crucial step in the move toward protecting our rights, our freedoms, and our privacy.

In conclusion, I think we can all agree that neither the state nor any other group, be it a corporation or organization, has any business knowing the genetic makeup of Canadians, and should not have the power to use this information negatively against any Canadian. We are a country of values, where we respect an individual's rights above all else.

The genetic non-discrimination act is one key step to encouraging those rights and freedoms to continue uninhibited for all the people the House represents.

[Mark Strahl, Conservative, Chilliwack—Hope, BC]

Mr. Speaker, it is a pleasure to speak again in the House on an issue of great importance to many of my constituents and to many Canadians. I will be supporting the bill.

The bill before us is Bill S-201, genetic non-discrimination act. The summary of the bill says that:

This enactment prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract or agreement with, or offering specific conditions in a contract or agreement with, the individual.

Essentially, the bill is to prevent discrimination based on genetic testing information to ensure that Canadians are not required to give that information to a third party and that this information cannot be shared without their consent.

I want to commend the member for Don Valley West on the speech he gave to introduce the bill in the chamber. I would recommend it to people who want to get a full appreciation of all the intricacies of the law and the amazing genetic testing and research that is out there.

We are in a new age, and the number of tests are expanding, as are the number of diseases that can be detected early on, and the number of genetic markers. The science is expanding every day. We want to ensure that Canadians are protected as more and more of our information, more and more of who we are, is exposed as a result of this testing.

The reason I wanted to talk about this is because of some families in my riding that have already experienced difficulties as a result of diseases they have been tested for, which have affected their ability to obtain life insurance. This is already happening. This is not some futuristic problem that may happen somewhere down the line. This is happening right now.

I would like to share a couple of stories from some people in my area. Quite frankly, I am not going to share their names or even the disease they are suffering from, because they are already concerned about what the repercussions would be for them if some of this information was revealed.

This is from a mom who says, “We chose not to get my son diagnosed, because he is basically healthy. I am looking to renew my life insurance and my agent was told by the underwriter that all patients with this disease have been denied insurance.” It should say whether they are symptomatic or not. She goes on to say, “It seems so unfair because this disease is typically not life-threatening. Disabling, yes, but I was seeking life insurance. If we tell sports organizations or community centres about my daughter's complicated medical history, they will not let us enrol. I need to not disclose health and safety issue so that she can live a normal life.”

Already there are some problems with obtaining life insurance.

Another family wrote to me and said, and this is about a hereditary disease in this family:

“For us, we had my son and I diagnosed before we knew anything, and before we knew we would never qualify for disability insurance. We have a very difficult time getting life insurance. I pay at least three times the amount for life insurance, even though my disease does not actually affect my lifespan. We are now in a predicament that our daughter is showing signs of this disease as well. We have to make a decision to get her tested. With testing, we can then qualify for things like the disability tax credit and possibly at-home funding and definitely special needs funding in school, but we are holding off because of the insurance implications. I worry how this testing and a diagnosis will affect her in the future. So we are paying out of pocket right now for her weekly physiotherapy sessions, $70 a week, and other therapies. We probably spend about $400 to $500 a month out of our own pockets so that we can protect her in the future, so that she is not discriminated against.”

Another person wrote to me about this and said that teachers and parents push for and are compelled to get kids outside the typical diagnosis, and funded, but this is going to follow them. It is going to help in some ways but it will hinder in others.

This is a choice that no parent should have to make. They should not have to be faced with the choice of getting funding for their kid, because then their kid will not be able to get life insurance when they are an adult. This is not the kind of country that we should live in, and it is something that we as parliamentarians should strive to protect people from. This is why the bill is so necessary.

There are other cases I think we need to look at. We have seen that mental health care has been an expanding field. This is something that we absolutely have to do more to address as governments at all levels.

I have talked to people who work in the House of Commons who have made it clear as well that not only are they not willing to come forward with their own mental health struggles because of the stigma surrounding it, but they are worried about their insurance and their health care plan. They are worried about the implications for them should they reveal a mental health issue. We encourage people to come forward, but we send a mixed message if we allow those people to be discriminated against for coming forward with that information and for seeking treatment.

This is why I was upset earlier. There is treatment available. There is a course of therapy available. There is funding available for kids, but parents have to make a choice right now, because they know from previous experience that if they reveal this to the wrong medical professional, the wrong insurance company, or even reveal it outside of the school system perhaps, that the child will pay a price for it, even though it will not affect their lifespan. This is not right.

Therefore, I am hopeful that as we study the bill, as we move forward to send it to committee and get more information out there, that we can talk about not only this area but other areas where perhaps our laws are not doing enough to protect those Canadians who are vulnerable, who could be helped but are afraid to seek help because of the repercussions.

I also want to mention, perhaps on a lighter note, that there are companies now that are advertising that we could just take a swab from our mouths and find out all about our ancestry; go to ancestry.ca and learn more about the makeup of our DNA. I think that, without the protections in the bill, we should be very concerned about that. This information is being retained. If we are not protecting people, what is to say that an insurance company might not ask if one has ever provided a DNA sample to determine one's heritage? If we do not protect those people, what is to say that it would not be a reason to deny insurance if they did not provide that information?

Again, it is more of a concern with this growing availability of DNA testing, of genetic testing. We need to be careful that we protect Canadians. We certainly need to stand up for those Canadians who are currently being negatively affected by the discrimination in the system.

I commend the member for bringing the bill forward, and Senator Cowan as well for starting this. The bill will have my enthusiastic support.

The House resumed consideration of the motion that Bill S-201, An Act to prohibit and prevent genetic discrimination, be read the second time and referred to a committee.

[Majid Jowhari, Liberal, Richmond Hill, ON]

Mr. Speaker, I am pleased to speak in support of Bill S-201, the genetic non-discrimination bill previously introduced in the Senate.

I begin by thanking my colleague, the member for Don Valley West, for bringing this important bill to the House.

At the end of my speech, there will be four key takeaways. I will highlight some of the benefits of genetic testing, its importance for preventing life-threatening diseases, and its critical contribution to scientific research and innovation. I will then show how discrimination can hinder these benefits due to the lack of protective legislation.

To avoid repetitiveness, I will not speak directly about what specific legislative changes this seeks to make, as this has already been eloquently covered by my other colleagues.

In the 21st century, we have at our disposal highly advanced mechanisms to extract information and to further our knowledge. We have also learned innovative ways to utilize this knowledge, create new machines, develop techniques, build things, and save lives.

Significant breakthroughs in the medical field have benefited from this abundance of knowledge. Life-saving surgical procedures were improved and life-changing drugs have been developed and tested.

The next prominent medical breakthrough on the table is genetic mapping, acquired through genetic testing.

A genetic test is a test that analyzes DNA and RNA, or chromosomes, for purposes such as the prediction of disease, vertical transmission risks, monitoring, diagnosis, or prognosis, in other words, a test that provides potentially life-saving knowledge. There are currently 6,000 known genetic diseases. This means 6,000 possible causes of death and 6,000 possible individuals living a life of hardship.

Simultaneously, there are 48,000 genetic tests. This is not an insignificant number. This means there are 48,000 possible genetic cases to be discovered, 48,000 ways to save a life, or 48,000 opportunities to gain knowledge.

Taking a genetic test can save a life. Armed with this knowledge, people can take action to protect themselves. They can take preventive measures or monitor themselves for symptoms to catch a possible disease early on.

Due to the diversity and advancement of discoveries, there are many other opportunities for taking preventive action through genetic testing. For instance, there are tests for genes associated with heart disease, cancers, and kidney diseases, many of which are easily preventable through simple procedures, provided there is early detection and treatment.

Monitoring and treating at an early stage would likely save an individual from having to go through tedious medical treatment procedures, hospitalization, medication, and hardship.

I can go on and on about the many diseases that can be prevented with having early knowledge of an individual's genetic makeup, but I will not. The main takeaway is that research about the benefits of genetic testing to saving lives is certainly not lacking.

Furthermore, genetic testing increases the potential for significant innovations. For instance, the field of genetics and genetic testing is interacting with stem cell research, where scientists are exploring ways to replicate genetically mutated cells for the purpose of closely investigating the functions of the cell and how it leads to manifestation of the diseases.

A recent discovery has been the use of induced pluripotent stem cells, also known as IPS cells, for the modelling of human genetic diseases.

I am neither a doctor nor a medical practitioner, but what I know for sure is that scientists are on the verge of understanding diseases by replicating their functions. They are doing that by using stem cells.

In furthering their understanding of how a disease functions, how it manifests, and why it affects certain tissues and not others, scientists will be better equipped for further innovations to reversing the negative outcomes of genetically mutated cells.

I can easily imagine a world where individuals with a genetically mutated gene or an inherited genetic disease will no longer be affected by the genes simply because scientists have found a way to neutralize the negative impact of the disease. I may be getting ahead of myself here, it may be just wishful thinking, but one thing is for certain. Science, research, and innovation will always find a way, and I strongly believe in that.

In order to gain the ability to conduct their research, scientists need to conduct genetic testing. They need to be able to collect large samples of genetically mutated cells to validate their findings. This is where the problem emerges in Canada.

In Canada, there are strong gaps in the legal system where individuals who take a genetic test will likely suffer unnecessary consequences. Canadians who cannot be sure they will be protected by the law have chosen to forgo undertaking genetic testing. They have chosen to give up on the knowledge and understanding of their genetic heritage. They have chosen not to participate in clinical trials for the purpose of furthering medical advancement and possibly curing genetic diseases.

I am referring to the gaps that would be addressed when we pass Bill S-201. These gaps, if not closed, will allow for individuals to be subjected to discrimination: the gaps in the Canada Labour Code where employees are not protected from being fired or refused employment based on the results of a genetic test; the gaps in the Canadian Human Rights Act that do not recognize genetic discrimination as a violation of the human rights of Canadians; the gaps that do not protect an individual from being discriminated against before receiving goods, services, or entering into a contractual agreement; and the gaps that do not protect individuals from being forced to take or disclose the results of genetic tests.

If we do not pass Bill S-201 and close the gaps in our legislative system that allow for genetic discrimination, Canadians with an inherited genetic disease will less likely have the chance to learn about their disease prior to its symptoms. They will be fearful of losing their employment through coercion. Our medical and scientific research will likely suffer from having limited test subjects who fear that participating in a breakthrough clinical trial will lead to discrimination in other areas of their lives.

Bill S-201 does not seek to introduce newfound laws. It does not seek to change Canadian values. Bill S-201 simply seeks to close the current gaps in our legislative system and to align our values with our legislation. If our values are not perfectly embodied in our laws, how can we ensure this continuity?

Canada must close the legal gaps with regard to genetic discrimination. I strongly believe this bill will provide Canadians with much-needed protections with no insurmountable ramifications. I encourage my colleagues in the House to closely consider the bill, to consider its positive impacts on Canadian society, and to vote in its favour.

The House resumed from September 20 consideration of the motion that Bill S-201, an act to prohibit and prevent genetic discrimination, be read the second time and referred to a committee.

[Sean Casey, Liberal, Parliamentary Secretary to the Minister of Justice and Attorney General of Canada]

Mr. Speaker, I am pleased to have the opportunity to speak to Bill S-201, an act to prohibit and prevent genetic discrimination. I would like to thank Senator Cowan for bringing this bill forward and the Senate for giving such thoughtful consideration to this matter both at committee and in its chamber.

Genetic discrimination is an important issue, particularly as more genetic tests become available to Canadians. Senator Cowan has been a champion against genetic discrimination for several years, working with stakeholders in the medical community and driving the public debate on the risks of genetic discrimination in areas like insurance access and workplace practices.

For his work, I know he has received an advocacy award from The American Society of Human Genetics. I also want to thank the hon. member for Don Valley West for sponsoring Bill S-201 here in the House and for his work in bringing this important issue to the attention of both the public and the House.

I also wish to recognize the work of the committee in the other place on Bill S-201. The committee's work exemplifies constructive debate and collaboration by members of different political parties. There is clearly support from across the political spectrum for the objectives of this bill.

As a government, we are committed to ensuring that Canadians have access to the best possible health care, including both preventive and medical treatments. The health of Canadians is of utmost priority for our government. We understand that genetic testing promises great benefits in the fields of health care and medical research.

Genomic-based research has already changed the way health care providers practise medicine. Genetic testing is one of the tools that is revolutionizing the way a diagnosis is made and has helped detect and, in some cases, treat many conditions. In recent years, improvements in technology have dramatically reduced the costs and time required for genetic testing. At the same time, therapies are becoming better tailored to the genetic characteristics of individual patients.

For these reasons, genetic testing is becoming a normal part of medical practice. Some medical experts believe that whole genome sequencing, in which a person's entire genetic makeup is mapped out, perhaps in childhood, will become the new diagnostic norm before long. However, there is increasing evidence that some Canadians are reluctant to undergo genetic testing that doctors believe will help with their health care. They have concerns about how the results of the testing could be used to their disadvantage in the future, most notably in the insurance and employment contexts.

The committee in the other place heard from numerous witnesses who spoke of persons who had been treated in an adverse way because of genetic information revealed about them through genetic testing. The government takes seriously the importance of access to genetic testing in Canada and the need to prevent inappropriate disclosure of genetic test results. The cabinet, therefore, supports the overall objectives of Bill S-201 and, in particular, the bill's proposed amendments to the Canadian Human Rights Act, the CHRA.

These amendments would add genetic characteristics to the list of prohibited grounds of discrimination under the CHRA. They would also specify that, where the ground of discrimination is a refusal to undergo a genetic test or to disclose or authorize the disclosure of the results of a genetic test, the discrimination shall be deemed to be on the ground of genetic characteristics. By adding genetic characteristics as a prohibited ground of discrimination, the CHRA can help to address concerns about the misuse of genetic information in a meaningful way. This is an important step forward.

Anti-discrimination laws, such as the Canadian Human Rights Act, aim to promote equality of opportunity in workplaces and in access to goods and services. They are also aimed at preventing arbitrary disadvantage based on personal characteristics that individuals cannot change about themselves. The CHRA currently prohibits discrimination on 11 grounds, including race, age, sex, and disability.

For those who are concerned about potential discrimination by federal employers based on the results of genetic testing, it is important to note that the CHRA already offers some protection against discrimination based on genetic characteristics. For example, discrimination based on perceived disability due to predisposition to a disease revealed through genetic testing falls within the scope of the existing ground of discrimination based on disability.

Bill S-201 would make existing protections more explicit, as well as expand protection beyond genetic characteristics that would be elated to other prohibited grounds of discrimination, such as disability. This would allow people who were subject to discrimination on the basis of genetic characteristics to make their case in precisely those terms.

Making a formal claim of discrimination can be an intimidating process and one that is often pursued without legal representation. For those who believe they have been discriminated against on the basis of their genetic characteristics, it would now be easier to bring such a claim, since they would no longer have to interpret the law of disability related discrimination or otherwise try to link their claim to another ground in order to establish discriminatory treatment.

Explicit protection for discrimination based on genetic characteristics would also raise awareness of the Canadian Human Rights Act protections and remind federally regulated employers and providers of goods and services of their human rights obligations.

For these reasons, the government supports the CHRA amendments proposed in Bill S-201. The proposed amendment represents an important step forward in creating the framework to address these potential disadvantages toward preventing genetic discrimination in Canada. I look forward to further discussion about the scope and impact of these changes to the CHRA as the bill is considered by a parliamentary committee.

However, it must be recognized that Parliament is limited in its ability to unilaterally address the concerns of stakeholders because there is no federal jurisdiction over private contracts of insurance, nor over employment or services in provincially regulated industries. For this reason, the government will also engage with the provinces and territories with a view to developing effective strategies regarding genetic testing and appropriate protection of the results of this testing.

The minister has informed me that officials in the Department of Justice are already working with officials from other government departments to determine how best to pursue discussions with the provinces and territories about the many different issues arising from the potential uses of genetic information. I know the government would welcome advice and input from Senator Cowan and the hon. member for Don Valley West.

The government looks forward to engaging in discussions that will complement Bill S-201 and can lead to practical and substantive protections for all Canadians.

[Don Davies, NDP, Vancouver Kingsway, BC]

Mr. Speaker, I rise today to speak to Bill S-201, an act to prohibit and prevent genetic discrimination. I am proud to indicate the full support of the NDP caucus for the bill's goals and principles.

I will take a moment to congratulate my hon. colleague for Don Valley West who, as long as I have been in the House, has been a paragon in standing up for the principles of human rights and anti-discrimination in a number of areas. I congratulate him on his stewardship of this bill.

Originally introduced and passed in the Senate as a private member's bill, the last version of Bill S-201 proposes to make amendments to the Canada Labour Code and the Canadian Human Rights Act. It would also introduce a series of new offences and penalties for genetic discrimination in contracts and in the provision of goods and services.

New Democrats strongly believe that the federal government must work to prevent genetic discrimination in order to ensure that Canadians can make use of such testing without fear to improve their health care planning and treatment options.

New Democrats are proud to stand with health care providers, medical ethicists, community organizations, and the overwhelming majority of Canadians in support of genetic privacy and in opposition to discrimination based on genetic information. This is why New Democrat MPs introduced legislation similar to Bill S-201 on three previous occasions, including former MPs Libby Davies, Bill Siksay, and Judy Wasylycia-Leis.

It has been said that New Democrats are Liberals in a hurry. In this case, it is certainly true that the NDP was ahead of the game. Frankly, if Parliament had followed the NDP lead in 2010 when this legislation was first introduced by NDP MPs, Canada would not be the only G7 country without this important protection today.

By its very nature, our genetic information is deeply personal. Genes are the basic building blocks of heredity in all living organisms. They are made up of DNA, and DNA contains the instructions for building proteins that control the structure and function of all the cells that make up our bodies. Privacy protection is therefore an essential element of maintaining public trust in the value of the rapidly proliferating field of genetic testing and treatment.

Like many other significant innovations, the information made available through genetic testing offers both tremendous benefits and potential risks.

On the one hand, genetic information can be used to diagnose genetic conditions and identify predispositions to genetic disease. This helps folks seek treatment early and adopt lifestyle habits to minimize the possible harm of a genetic condition. It also helps health care professionals tailor therapies to a patient's specific genetic profile.

On the other hand, without appropriate legal restraint, genetic information can be misused to subject Canadians to discrimination based on the traits revealed by genetic testing. For example, if an insurance company learns that an applicant is at higher risk for certain disease, this may affect the cost of the policy it is willing to offer that person, if it is offered all. If an employer knows that an applicant is at higher risk of developing a genetic condition or illness, the employer may be unwilling to hire that person or continue to employ him or her.

Currently, there is no law in place that specifically protects Canadians' genetic privacy. Only a voluntary code of conduct governs how the results of genetic testing can be used by employers and insurance companies, and that is not good enough.

Moreover, existing Canadian privacy and human rights legislation is wholly inadequate to address genetic discrimination, because it fails to address cases of “future disability, perceived disability, or imputed disability”, and it fails to proactively prevent discrimination. Instead, it offers remedies after the discrimination has already occurred. The person who is discriminated against must make the complaint and then seek appropriate legal action, which is often a costly and time-consuming endeavour. This puts Canada out of step with our country's major industrial counterparts.

As Richard Marceau, general counsel and senior government advisor at the Centre for Israel and Jewish Affairs, has pointed out:

Canada’s wait-and-see approach has resulted in a serious legislative gap that no longer exists in any of our G7 partners or in countries like Israel, which enacted comprehensive safeguards as far back as the year 2000.

In liberal, democratic societies in a market economy, the 14 years that followed clearly indicated that legislative protections would not destroy the insurance industry, no more than they would cause employers to go bankrupt. Experience shows that these fears are unfounded.

Canadians from coast to coast to coast expect their government to take immediate action to close this gap and protect their genetic privacy, and none more so than those directly touched by genetic conditions and illnesses. I recently had the honour of participating in Ovarian Cancer Canada's Walk of Hope at Queen Elizabeth Park in Vancouver. Ovarian cancer is the most fatal women's cancer. In Canada every year it claims approximately 1,800 lives, and nearly 2,800 Canadian women will be newly diagnosed with the disease every year. Because it is often caught in its late stages, 55% of women diagnosed with ovarian cancer will die within five years. Although existing research has confirmed a strong link between genetics and ovarian cancer, women may fear testing and some do not get testing because their genetic privacy remains unprotected.

According to Elisabeth Baugh, the CEO of Ovarian Cancer Canada:

While all women are at risk for ovarian cancer, women with specific gene mutations are at greater risk than others. Knowing about your genetic makeup enables informed decisions about preventive action.... To support this, we need assurance that genetic information won’t be misused by employers or insurers.

This view has been echoed by Ovarian Cancer Canada's partners in the Canadian Coalition for Genetic Fairness, an alliance of organizations dedicated to establishing protections against genetic discrimination for all Canadians. These include the ALS Society, Alzheimer Society, Canadian Breast Cancer Foundation, Canadian Congenital Heart Alliance, Cystic Fibrosis Canada, the Canadian Organization for Rare Disorders, Huntington Society of Canada, the Kidney Foundation of Canada, Multiple Sclerosis Society of Canada, Muscular Dystrophy Canada, and many others. These groups advocate on behalf of the families directly affected by genetic conditions and illnesses, folks who are witnessing the disturbing prevalence of genetic discrimination first-hand.

According to the coalition:

Cases of genetic discrimination have been documented in Canada and are continuing to grow as more genetic information becomes available.... To assume that someone’s DNA will result in a disease or disorder is faulty, misleading...speculative [and dangerous].... Every person has dozens of genetic mutations that could increase or decrease his or her chance of getting a disease such as diabetes, heart disease, cancer, Parkinson’s or Alzheimer’s disease.

Indeed, a groundbreaking study from the University of British Columbia documented precisely how widespread this discrimination has become. UBC researchers surveyed 233 Canadians with a family history of Huntington's but no symptoms of the disease. They found that nearly 30% of subjects experienced unfair treatment at the hands of insurance companies.

It is clear that by prohibiting genetic discrimination Canadians would be empowered to make more-informed choices about their own health without having to fear negative repercussions. New Democrats believe that no Canadians should ever have to forego critical testing because they lack protection from discrimination. That is why New Democrats strongly support the principle behind Bill S-201. If passed at second reading, we will work hard to engage in a rigorous study of this legislation at committee because it is vitally important that we get the details right. Countries that have enacted laws to prevent genetic discrimination have taken various approaches, and we should learn from each experience to craft a comprehensive made-in-Canada approach to genetic privacy.

All Canadians are affected by genetic discrimination, and leadership is needed at the federal level to ensure that genetic testing is only used to improve and save lives. I hope that the federal government will work with the provinces and territories because many employers and insurers in this country fall under provincial jurisdiction and we want to see the legislation and approach replicated at all levels so that every Canadian, no matter if he or she works in a provincially or federally regulated workplace or regardless of where he or she seeks insurance, is covered by this bill.

I want to conclude by saying that there is one improvement to the bill, which I will identify right now. While it would prevent discrimination, we need to ensure that insurance companies are not able to offer incentives to people to get a lower premium on insurance if they voluntarily subscribe to genetic testing. Those are the kinds of positive proposals the NDP will bring to the table. I congratulate my friend and the government for bringing this important legislation to the House.

[Karen Vecchio, Conservative, Elgin—Middlesex—London, ON]

Mr. Speaker, I am truly honoured to stand here today at the beginning of a new session to speak on such important legislation, Bill S-201, an act to prohibit and prevent genetic discrimination. I thank the member opposite from Don Valley West for sponsoring this Senate bill that allows us to have active debate on this issue.

I was first made aware of this piece of legislation from a visit by Ovarian Cancer Canada in May. The regional director from Saskatchewan and Manitoba, along with ovarian cancer survivor, Lauren Richards, came to my office to discuss their types of cancers, their concerns, and what we as members of Parliament and government can do to help the thousands of victims of this terrible disease.

Through our discussion, I was advised that ovarian cancer is the most fatal cancer for women in Canada and that 2,800 women would be diagnosed this year, with an additional 1,750 dying from this disease. Unfortunately, because of the symptoms of ovarian cancer, the diagnosis can be very confusing and disease go undetected. Lauren advised me that many physicians diagnose this disease as a bladder infection. Meanwhile the disease continues to spread. Because of this, the mortality rate is such that more than half of the women die within five years. The words for this are “just brutal”.

My own office assistant, Kim, was diagnosed in 2000. Luckily she is with us today, as it was detected very early and she has not just become one of those statistics. Kim is now tested annually, as doctors know of her medical history, but the question is what can we do to help people like Kim and Lauren, women who have this disease and who, in over 50% of cases, will die in five years? The answer is genetic testing. Genetic testing would not only provide an individual with a sigh of relief to find out whether or not they are a carrier of a mutated gene, but it would also allow individuals to get the appropriate care and treatment to deal with the diseases.

In 2015, former justice minister MacKay tabled similar legislation prior to the fall election. This legislation was especially supported by the Jewish community, which has a disproportionately higher number of genetic markers. I was made aware of this during my meeting with officials of Ovarian Cancer Canada, who advised me that their own colleague would not have this testing done, due to insurance concerns.

When preparing for speeches, many of us in the House read a lot of news articles and studies to do with the issue in question. One case from California in particular came to my attention. A young boy was transferred out of his school because of the results of his genetic testing. He had tested positive for genetic markers for cystic fibrosis but did not have the condition. This is a clear case of discrimination.

I believe that when we look at this issue we need to decide if it is about the quality of life and the betterment of our health decisions or the ability to discriminate. Currently we are the only G8 country that does not have legislation to protect our citizens from genetic discrimination. Similar legislation in the United States, Australia, the United Kingdom, and New Zealand, to name a few, already includes safeguards for their citizens.

I understand the concerns of insurance companies that have spoken out against this legislation, but in countries like the U.K. they have come up with solutions and proposals. Studies that have looked at the impact on the insurance companies, who are concerned about people over-insuring themselves to secure a large payout for their family when they pass on, have found that over-insurance is not truly an issue, as over 97% of those companies' policies fall below those considered limits. I recognize that the regulation of insurance companies is a provincial responsibility, but I believe that as a federal government we can set the tone for human rights across Canada.

During my preparation for this speech, I read the different proposals forwarded to other governments by insurance companies. Rather than saying that this is a provincial regulation, we can work collaboratively to make sure that we are protecting Canadians.

It is not just for diseases like ovarian cancer and breast cancer, but for people who have parents with Huntington's disease, heart disease, and many other diseases, for which this genetic testing would be very helpful. There are so many uses for this type of screening to help people make their choices about their health care needs. Personally, I have a mother who had a triple bypass, and whose mother and family members had a number of heart disease issues, including my aunt, uncle, and great uncles.

Just a couple of years ago, my sister, a very active and fit 48-year-old woman at the time, was diagnosed with a heart condition and now has a defibrillator implant. For me personally, this does cause concern. Do I have the same issue or will I find out that I do like my sister did when she passed out in her family's hallway? Will my daughters and sons have this condition? Does my husband carry the gene for prostate cancer like his grandfather?

As the leader of the Senate Liberal caucus said in January 2016, scientists here in Canada are unlocking keys to our DNA and the results are revolutionizing medicine. As he indicated, just because individuals have the markers, it does not mean they will develop the condition, but just knowing can change so many things for them, such as lifestyle, diet, exercise regime, and particular medications or perhaps surgery as necessary.

An extremely popular example of this is Angelina Jolie. When she discovered she had a genetic disposition for breast cancer, she dealt with it by having a double breast mastectomy. As a mother caring for many children, she had the hardships somewhat relieved for her. This is an example of providing peace of mind not only for her but also for her children.

As I indicated earlier, I had the opportunity to speak to an ovarian cancer survivor who luckily had been diagnosed early. However, we must keep in mind that misdiagnoses can occur and do, especially with these types of cancers. The ability to save a life is crucial.

With respect to discrimination, there have been situations in Canada where people have lost their jobs following positive test results for specific diseases. People have lost out on promotions and have come under scrutiny on the job due to their potential conditions, and it is not just with respect to employment insurance. Due to positive results, families have not had the opportunity to adopt children. Instead of having the opportunity to raise a family, individuals go without, and they may not even have the condition but have just tested positive for it.

It just does not make sense for us as parliamentarians to not support such an important piece of legislation. We need to set the bar and we need to set that now. We need to do what is best for Canadians, and supporting this legislation is just that. I urge all members to take an important stand and support Bill S-201, an act to prohibit and prevent genetic discrimination. I urge members to look at the health of people and to allow provincial regulators to find solutions to assist Canadians who have tested positive for gene markers. I urge Canadian researchers and our medical professionals to work together to encourage testing, especially in cases where there may be something that could be detected, which would allow Canadians to make their own personalized health care plans.

I would truly like to thank Ovarian Cancer Canada for coming to my office and informing me of what we can do and how we can be part of the solution that would make a difference for all Canadians, now and in the future.

[Lloyd Longfield, Liberal, Guelph, ON]

Mr. Speaker, I thank my hon. colleague for an excellent, detailed, and passionate presentation.

Last week, I spoke with members of the Huntington Society. They also pointed out that we are behind, that we are the only G7 country that does not protect genetic information.

Would the hon. member explain why it is important that Bill S-201 have criminal penalties in addition to the legislation we are putting forward?

[Rob Oliphant, Liberal, Don Valley West, ON]

moved that Bill S-201, An Act to prohibit and prevent genetic discrimination, be read the second time and referred to a committee.

Mr. Speaker, it is a great honour to be here today as we consider in the House the first bill that is coming to us from the Senate, and I am proud to be its sponsor.

This legislation was first introduced by Senator James Cowan and has already received unanimous support in the other place. Today I hope to convince members of this chamber to give it the same enthusiastic support in the House and thus change the lives of millions of Canadians.

Genes are the building blocks of our lives. They tell us who we are and where we come from, our inherited strengths, and our susceptibilities. Our genetic makeup is more fundamental than our ethnicity, our gender, our race, or even our sexual orientation. It is the foundation of who we are as human beings.

Since the discovery of the human genome, we know that our genetic codes contain information that can prevent illness, thwart disease, improve or even save lives. The late U.S. senator Ted Kennedy observed the discovery of the human genome would affect the 21st century as profoundly as the splitting of the atom or the invention of the computer in the 20th century.

When Senator Cowan first introduced the bill in 2013, there were only 2,000 genetic tests available. Now today, after three and a half years, there are more than 48,000 genetic tests for diseases like Huntington's disease and early onset Alzheimer's. There are tests for genes associated with ALS, kidney disease, breast and ovarian cancer, and certain forms of colon cancer, and the list is growing at a truly exponential rate.

Canadian scientists last year discovered the gene that was associated with cystic fibrosis. Just this summer researchers have found the gene associated with metastatic, fast-moving prostate cancer, explaining why with some men prostate cancer moves slowly and in others it advances very quickly, perhaps informing treatment or helping people determine their options. This probably explains why my father lived for over 20 years with prostate cancer and yet some of his friends died after only 18 months.

Canadian health care institutions conduct tens of thousands of these tests each year. The information gleaned from them allows Canadian researchers and physicians to diagnose diseases, guide treatment, inform reproductive planning, and warn of adverse drug reactions. They are also used for clinical trials by innovative pharmaceutical and biotech companies to find new treatments for old diseases.

In most cases having a genetic makeup does not mean that a person will automatically or even necessarily develop a disease or condition, only that one might. However, knowledge is power and this opens up the possibility of taking concrete steps to reduce the possibility or the chance that a disease or a condition will develop in the first place.

Perhaps the most famous example of this is actor Angelina Jolie. People will probably know that her mother died of cancer. When she looked at that, she decided to undergo the test and determined that indeed she was a carrier for the BRCA1 gene. Women with this genetic mutation have as high as 87% chance of developing breast cancer and as high as 60% chance of developing ovarian cancer. Ms. Jolie opted to have preventative surgery and reduced her chance of getting breast cancer from 87% down to 5% and reduced her chance of getting ovarian cancer by some 98%. She wrote in The New York Times, “I can tell my children that they don't need to fear they will lose me to breast cancer”.

The benefits of genetic knowledge should be not limited though to celebrities. Every one of us in the House may want to undertake a genetic test at some point. Famous or not, none of us should be denied access to a genetic test and none of us should be afraid of having a genetic test for fear of discrimination.

In the course of working on this legislation with Senator Cowan, I came to know the story of a young man who was only 24 years old who had family members who had tested positive for Huntington's disease. Given that kind of family history, he had to weigh out his options about whether he should actually have the test to see if he carried the same genetic makeup. He took the difficult decision to have that test and he shared that decision with his employer.

On a Friday, he found out he had tested positive and, indeed, had the gene. His employer asked him what the result was, and he was honest and told him. The Monday following, he went to work and was fired. He was a video editor. His employer was afraid, for some reason, for his equipment.

Of course, this young man did not have the disease, does not have the disease, and will likely not develop any symptoms for this disease for maybe as many as 20 years. Huntington's is an area of huge research right now. There are clinical trials going on right now for drugs which would perhaps delay the onset even further. However, he is being discriminated against now for a disease he might never have if medical science works the way it should.

This bill is inspired by the belief that all Canadians should profit from the advances in genetic science. To achieve this goal, the genetic non-discrimination act seeks to ensure that the knowledge that we have through genetic research is protected from potential abuse and that there are as few impediments as possible to getting tested.

In Canada, unlike most western countries, if one has a genetic test, there is no protection from a third party using that information, those test results, perhaps to one's detriment. This is the problem of genetic discrimination and that is what Bill S-201 seeks to address.

Genetic discrimination can take many forms. As in the first story, it can take the form of employment determination, denial of a promotion, denial of child custody, and there are cases of this, an increase in insurance premiums, or even cancellation of an insurance policy. Each one of these is a heartbreaking story.

Dr. Ronald Cohn is a clinical geneticist, now pediatrician-in-chief, at SickKids hospital in Toronto. He testified in the Senate about parents feeling they had to refuse genetic testing, even though it could point to the best way for treatment or care, for fear that their child, who may be sick, could face future discrimination. He spoke of parents who had spent years searching for diagnoses, who broke down in tears as they had to decline genetic testing because of concerns over genetic discrimination.

He described one young patient whose symptoms were consistent with two different diseases, and the only way to promote the diagnosis and get the right treatment was to actually have a genetic test. However, the parents felt unable to consent for fear of discrimination. Dr. Cohn told senators that without the test, he could not properly care for the young girl. Without legislative protection, her parents could not agree to have the test done. This is not a choice or decision a parent should ever have to make.

Canada is one of the few industrialized countries in the world without some sort of legislative protection for its citizens' genetic information. Our laws lag behind Austria, Belgium, Bulgaria, Denmark, Finland, France, Germany, the Netherlands, Norway, Portugal, and Spain. The United States has had this sort of anti-discrimination law in place over 13 years, with the federal genetic information on discrimination act. Twenty-four American states have passed additional legislation limiting the use of genetic information by life, disability, and long-term care insurers.

Renowned award-winning genetic researchers with international experience are expanding their reach of precision, personalized or targeted medicine. The future of medical care is rapidly changing. There has been no significant advancement in anything medical since the discovery of the human genome. Without protection, Canadians will not benefit from these huge advances in medical science. This affects the health of every Canadian that we are here to serve. It affects the future of medical science in our country. Personalized or targeted medicine is the future of medicine and Canadians deserve protection to ensure they get the best care, and that we do not waste health dollars and ensure we have the best public and personal health.

I call Bill S-201 a three-legged stool. Each piece of the legislation is crucial to fighting discrimination. They are, in order of importance: the proposed new genetic non-discrimination act, or what I am now calling the GNA to fight discrimination against RNA or DNA; then the amendments to the Canada Labour Code; and, finally, amendments to the Canadian Human Rights Act. Each part is essential. This bill cannot be arbitrarily disassembled any more that a stool can lose a leg or two and still support us.

Principally, the very first thing is that the bill would create a new genetic non-discrimination act, a GNA, with three new criminal offences. It would prohibit requiring anyone to undergo a genetic test, or to disclose the results of a genetic test, as a condition of providing goods or services. It would also prohibit the collection, use or disclosure of the results of genetic testing without that person's consent. Of course, the bill contains exemptions for healthcare practitioners and for research.

To my mind, this is not controversial. None of these prohibitions are controversial and they are urgently needed. The new genetic non-discrimination act is the single most important part of this bill. The GNA is necessary to fight DNA or RNA discrimination.

It states clearly and unequivocally that society condemns genetic discrimination. It is unacceptable behaviour, and it will not be tolerated. The criminal sanctions are set high to serve as an effective deterrent. The bill does not target sectors or industry; it targets bad behaviour. It names the bad behaviour and ensures that there are laws to protect people against those behaviours.

Our job as federal legislators is to put into place laws that will protect Canadians. We have the criminal law power to do that work. That criminal law will state what is unacceptable conduct, and then prohibit that conduct. That is what Canadians expect us to do on their behalf.

Second, Bill S-201 would amend the Canada Labour Code with a set of amendments, providing a complaint procedure for employees in federally regulated workplaces who encounter genetic discrimination. I know this number is not large, but nonetheless they are important and this could serve as a model for other jurisdictions.

Last, there is a set of amendments that adds “genetic characteristics” as a prohibited ground of discrimination under the Canadian Human Rights Act.

This is a three-legged stool with an act, with criminal penalties, changes to the Labour Code, and changes to the Human Rights Act, holding us up as a robust piece of legislation that will protect our rights as Canadians and ensure the best health of Canadians.

It is interesting. I have heard that there is some sense that we should not have a stand-alone act, but it is fine to simply put this into the Canadian Human Rights Act.

Peter Engelmann, a labour lawyer and human rights advocate, former counsel to the Canadian Human Rights Commission, told senators why, in his opinion, the specific protections as were proposed in the genetic non-discrimination act were critical, and why just amending the Human Rights Act alone was not sufficient.

The reality is the way human rights legislation works is it is reactive instead of proactive. It puts the burden or the onus on complainants. They bear the costs. They bear the burden and the stress of taking a complaint forward, which is after the fact not before the fact. There are not significant deterrents in it. Sometimes people are very vulnerable in difficult positions in which they should not have to be.

The act would ensure we have, together, one act that would make it a crime against Her Majesty, against the state, and thus would ensure that we would have adequate protections to do that.

Senator Cowan presented an earlier incarnation of this bill and tested its constitutionality. The Senate has deemed, indeed, that we do have the federal power to enact this sort of legislation to ensure that Canadians are protected.

Law professors, experts, will disagree. Essentially, I hope the Standing Committee on Justice and Human Rights will examine that thoroughly. I am convinced it will find that we do have the federal authority, the federal power, as we do in other areas of legislation, to enact this sort of bill.

The federal government has that power in securities, in tobacco marketing and other things under so-called provincial jurisdiction, however, we believe this is the right thing for the federal government to do.

Canada is behind. Canada needs to step up to the plate. Canada needs to do this now. We are behind and we need to act. This is our chance, as legislators, to bring better health to Canadians and ensure that Canadians have access to genetic tests. We, this day, will be able to save lives.

[Thomas Keenan, Professor, University of Calgary, As an Individual]

Thank you very much, Mr. Chair, for the invitation to participate in your meeting. I'm going to share some thoughts about technologies that are just around the corner and that I believe will have a profound impact on how we think about privacy. My goal is to help us understand them so that, as much as possible, our laws can be ready for what's coming next.

I am a professor in the Faculty of Environmental Design at the University of Calgary, as well as an adjunct professor of computer science. I'm a research fellow of our Centre for Military, Security and Strategic Studies and of the Canadian Global Affairs Institute here in Ottawa. I've spoken to all the major hacker conferences like DEF CON, Black Hat, and one with the intriguing name of Hackers on Planet Earth, so I try to keep track of what both the good and the bad hackers are up to.

I'm also pretty sure that I taught Canada's first course in information security in 1974. Back then it was simple: lock your computer room doors, choose good passwords, and don't put confidential stuff in the trash. Today, it's much more complicated.

Consider a 2015 project called “The Face of Litter”, sponsored by Hong Kong Cleanup. Workers collected discarded chewing gum and cigarette butts on that city's streets and sent them to Parabon NanoLabs, a privately held Delaware corporation. Parabon used DNA phenotyping to create an approximate digital portrait from each sample. A week later, on passing the scene of the crime, the spitter saw an eerily familiar face on a video screen, a DNA-driven self-portrait.

Now, how could they do this? There was plenty of saliva left on those discarded items to do DNA analysis. In fact, it requires only one nanogram. Certain traits like eye colour, hair colour, and facial shape are easy to work out. Ancestry can be analyzed. Stir in machine intelligence and real-world knowledge—gum chewers are more likely to be 18 to 34, and cigarette smokers older—and you get a very creepy scenario whereby biodata is used not to identify someone specifically, but to infer things about the person. This challenges our long-held definitions of personally identifiable information and personal health information.

In my 2014 book, Technocreep: The Surrender of Privacy and the Capitalization of Intimacy, I suggest that a store might grab a few skin cells when you type in your PIN and send them off for analysis. The next time you visit that store, you might see a pop-up asking if you knew you were pre-diabetic and saying, “Here's a special coupon just for you.” While to my knowledge no store is doing this yet, we have seen retail outlets in the U.S. and the U.K. use facial recognition to identify shoplifters, VIP customers, and known litigious individuals. Banks such as HSBC are already using facial recognition for client identification, and several Canadian banks are doing biometric trials.

Your biometric data, be it your voice, face, or DNA, might well be covered by the Privacy Act and under PIPEDA's definition of personal health information, though those definitions will need to be updated as technologies emerge, but does this legal protection do the average person any good? In practice, many customers would not notice an obscure clause authorizing the use of their biometric data in the retail or banking environment. It could be buried in the terms and conditions document, which hardly anyone reads. Some people might even give consent to the use of their biometrics, hoping to save money, get better service, or obtain useful health information.

I believe that citizens may not fully understand all the implications of collecting, storing, and exchanging their biometric data, as well as secondary uses and cross-correlation of biometric and other databases. We need laws that mandate full disclosure and a process to ensure real compliance, which would mean more than just guidelines on the OPC website. Even today, public overt surveillance cameras are supposed to carry proper signage. In my experience, most carry no signage, and nobody does anything about it.

Then there's the time problem. Fifty years ago, a criminal may have left blood at a crime scene with impunity since, aside from determining blood type, it didn't hold much information. Today, law enforcement is solving long-dormant cold cases through DNA analysis of old samples.

We cannot predict what future data analysts will extract from our biological and biometric data, except to say it will be more than they do today. Experts also suggest that quantum computers will be able to retroactively decrypt decades of data that we currently believe is secure. There's a wonderful phrase that describes all this: beware of time-travelling robots from the future.

I do detect a growing unease in the Canadian public. When I talk to people about biometric identifiers, from ear shape to heart rhythms to your unique body odour, which can identify you, their ears perk up. Recently I was approached by Costco's magazine for an article on the downsides of biometric identification. I explained how fingerprints can be stolen and put on a fake finger with a 3-D printer. A hacker named Starbug even captured the fingerprints of the German defence minister from a high-resolution photo of her hand.

Even more troubling is the belief that biometrics are infallible, which they are not. They have error rates that vary depending on parameters set by the designers. The first-generation NEXUS terminals used at Canadian borders would sometimes fail to uniquely match a person from the eye biometrics they obtained.

Illinois and Texas have passed specific commercial biometric privacy laws, and article 9(1) of the European Union's forthcoming general data protection regulation puts specific restrictions on use of genetic data and biometric data where processed to uniquely identify a person. Canadians need a similar level of protection, and these laws provide a starting point for us.

Another area that needs serious thought is behavioural biometrics. In Technocreep I review Progressive Insurance's Snapshot device, which people install voluntarily to try for a discount on their car insurance. It records how much they drive, when they drive, and how hard they hit the brake. I suggested that it might be a sensible choice for some people, especially since it didn't track where they drove. Then Desjardins insurance brought out the Ajusto app, which uses your smartphone to create a driving-quality score. Unlike Snapshot, this system knows exactly where you are, and even how well you respect the speed limit.

Right now, systems of this nature are opt-in, and the companies take pains to tell consumers that even bad driving will not raise their rates. However, there is certainly the possibility of driving monitors and even wearable fitness monitors becoming de facto mandatory in order to obtain insurance at a reasonable rate. Insurance is, after all, about spreading risk and charging risk-based premiums.

In opposing the long-overdue genetic privacy law for Canada, Bill S-201, Jacques Y. Boudreau, chair of the committee on genetic testing for the Canadian Institute of Actuaries argued that an essential element for insurance to work properly is an equal access to information by both parties. There is clearly tension brewing between our right to keep information private and commercial interests.

We spend a lot of time worrying about how an authorized data collector uses our data. However, a flood of data breach examples, from the Sony hack, to the DNC emails, to the Ashley Madison fiasco proves that our personal data can fall into the wrong hands with devastating consequences. People whose email addresses appeared on the Ashley Madison client list have received blackmail threats, suffered workplace repercussions, and in three reported cases have committed suicide. A further complication here is that people could appear on that list without having actually signed up due to the lax design of the system.

While there are hacking-related Criminal Code provisions such as mischief in relation to data and unauthorized use of computer, these do not directly address the privacy implications of hacking. Of course, many perpetrators are never caught, but some are. There should also be consequences for the entity that manages the data if they did not take reasonable precautions to secure it.

Therefore, I support effective data breach notification in both the public and private sectors, as well as enhanced mechanisms, including order-making powers, to enable the Privacy Commissioner to preserve public confidence. I also support regular review of our privacy laws at least every five years.

I will close by revealing that you've been listening to a cyborg, a human being with a new technological body modification. I had an RFID chip implanted in my hand at this year's DEF CON conference. Right now it gives me only one superpower: I can open my door at the university without fumbling for my ID card. In the near future, devices will be available to give people telephoto vision, super-acute hearing, and enhanced mental powers.

Canada's first privacy laws date from the era when information was kept on paper, and we dragged them into a world where our data lives in cloud networks somewhere on the planet. Our next challenge, one that will keep us busy for a long time, is dealing with the implications of the data being us, an intimate part of our humanity.

Thanks so much for your attention. I look forward to your questions.

[Rob Oliphant, Liberal, Don Valley West, ON]

moved that Bill S-201, An Act to prohibit and prevent genetic discrimination, be read the first time.

Mr. Speaker, it is a great honour to give first reading to Bill S-201, an act to prohibit and prevent genetic discrimination. I want to thank my hon. colleague, the member for Madawaska—Restigouche, for seconding this.

The bill would create a new genetic non-discrimination act that would prohibit all service providers from demanding genetic testing or requiring that a person disclose the results of past genetic testing. It also provides for a complaint procedure for federal employees facing disciplinary actions because of genetic testing, and adds genetic characteristics as a prohibited ground of discrimination under the Canadian Human Rights Act. The protections in the bill would enable Canadians to access medical advances in genetic testing without the fear of negative consequences or repercussions on them and their families. It would empower Canadians to have better health.

(Motion agreed to and bill read the first time)

Message from the Senate

[The Deputy Speaker, Conservative, Bruce Stanton]

I have the honour to inform the House that a message has been received from the Senate informing this House that the Senate has passed the following bill to which the concurrence of the House is desired: Bill S-201, An Act to prohibit and prevent genetic discrimination.