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.

[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.