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 or agreement with, or offering specific conditions in a contract or agreement with, the individual. Exceptions are provided for health care practitioners and researchers. The enactment provides individuals with other protections related to genetic testing and test results.
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.

Genetic Non-Discrimination Act

[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.

[Garnett Genuis, Conservative, Sherwood Park—Fort Saskatchewan, AB]

Mr. Speaker, it is a pleasure for me to rise today to debate the bill.

This is an important bill substantively, but I think it also signals an important moment in the life of this Parliament. It speaks to the opportunity that we have as individual members either to stand up for a cause that is important, and indeed to stand up for the importance of the role of members of Parliament, of the work we do in committee and elsewhere, or perhaps it will be a moment when too many members roll over to pressure from the front bench. I want to talk a bit about that context and then speak about the substantive portion of the bill.

This is a bill that was approved unanimously in this place at second reading on October 26. All members of all parties supported it at that time. Of course, it is fair for members to support in principle legislation which they then want to see amendments to and then to subsequently vote against it at third reading. However, it is worth noting that at the time, this reflected a very strong consensus of members.

The bill was studied in detail at the Standing Committee on Justice and Human Rights under the very able chairmanship of my friend from Mount Royal. All of the clauses of the bill were approved in committee. I understand the committee heard from many different witnesses, did a detailed analysis of the bill, and reported it back recommending support. Then, much to the surprise of members here, we had the government, the member for Edmonton Centre, notably the former parliamentary secretary for Canadian heritage, not even somebody responsible ostensibly for anything related to this file, put forward amendments which gut the bill. These amendments were to delete every single clause. When he moved these amendments, he noted that they had not been considered at committee.

Of course, as other members have pointed out already, committees do not consider amendments to delete clauses. They vote on clauses in whole. That is the time when members of the committee can consider whether or not to include a particular clause in the bill. Every one of those clauses was approved by the members of the committee, which of course includes Liberal members of the committee.

This eleventh hour amendment coming from the government was not simply a matter of the parliamentary secretary showing disregard for the work of the opposition. He was showing disregard for the work of all members of the House, including government members who had worked very hard on this piece of legislation. This bill was moved by a Liberal member, the member for Don Valley West, who has worked very hard on this issue. Many other members of the government have spoken passionately, and I think very effectively, about the merits of this bill.

I say to members who are considering how they will vote when this comes up that this is really an important opportunity to send a signal about the role of members of Parliament in this place and where we stand when it comes to what our responsibilities are. We are not here as delegates of a political party, at least not principally. We are not here as members of some electoral college that simply chooses the prime minister, who then chooses the cabinet. We are here to speak on behalf of our individual constituents and to articulate our convictions which reflect their convictions. We have a responsibility to the people who sent us here and to this institution to exercise our considered judgment in the votes we take.

I know it is not always easy to vote against a recommendation that comes from one's party, but especially on matters of grave importance such as this that deal with fundamental human rights and discrimination, we have a responsibility to exercise our considered judgment here and vote on behalf of our constituents. I know there are some members of the government who are prepared to do this.

I hope that we will see this very good legislation pass. It is legislation that was recognized to be constitutional, the value of which was recognized by the committee, and was recognized here at second reading. I hope we will proceed with it again as a recognition of the importance of this legislation, but also as a recognition of the importance of members of Parliament and the value of the work that was done.

The committee study process and the debates that have happened in this place, these are not mere matters of form. These are important venues and opportunities for actual discussion and consideration. When all of those discussions point to the importance of the bill and the value of approving it, surely we have a responsibility as members to consider that, take it on board and support it, not to sanction this eleventh hour gutting attempt by the government, moved by a member not even given specific responsibility, as far as we know, for this file.

That said, recognizing the importance of where we are procedurally, I would like to speak as well about the substantive aspects of the bill. The bill addresses genetic discrimination. There are genetic tests that individuals can have. They give them information about themselves, and their predisposition, perhaps, to contract certain health problems later in life. However, it is currently legal for employers, for insurers, for others, to use that information to discriminate against individuals.

This is a form of discrimination like any other. We do not accept discrimination in this country and we should not accept it in the case of genetic discrimination. It is a basic extension of our well-established norms of human rights protection. However, there are additional points about genetic discrimination that should underline the importance of passing this legislation, because not only is this a form of discrimination at a basic simple level, but this kind of discrimination discourages research and it discourages people from getting tested.

Right now, if a person receives more information about their genetic makeup that may help them understand what they might experience in the future, that information could be used against them, which creates perhaps a disincentive for them to gather that information. It also creates a disincentive for those who might be looking to help people with a particular genetic ailment, a disincentive to do research, knowing that their research might be used to discriminate against the people they are actually trying to help.

This reality, that the current law allows this kind of discrimination, could well, as the science advances, put a disincentive in place for people who want to get tested and for people who want to do research. Yes, we recognize that this is a form of discrimination, but it is also particularly pernicious insofar as it can put a chill on that research, a chill on people getting information that would be useful to them.

There is a simple response to this. We can pass well-drafted legislation that experts at the committee recognize because it is in the constitutional jurisdiction of the federal government. We can address this discrimination and we can at the same time remove these chilling elements.

I should also underline that for those who think there is some fundamental, unforeseen problem to moving forward with this, Canada is an outlier. We are the only G7 nation that does not have laws with respect to genetic discrimination, and usually we think of Canada as a leader in combatting discrimination. In fact in this case, we are an outlier and it is Canada that needs to catch up, and unfortunately, some members of the government do not seem to want to see that happen.

We have a common-sense bill before us that addresses discrimination, that helps us to catch up with the rest of the world, and that also opens the door for expanded research and makes it easier to choose to get tested.

We will have a vote on the bill tomorrow, and I hope every member of Parliament will vote in favour, but at least I hope that every member of Parliament will actually take the time to study the legislation, to consider what was said at committee, to consult the members of their party who were on the committee and who were a part of that study. We all have that responsibility, not just to look at the recommendation we get and sail in that direction, but to really think through the impact of this.

I think what the government has tried to do is wrong, trying to, at the 11th hour, undercut the important work that was done by the committee and done by this House is not the right way to proceed. This is the right bill to move forward and this is an opportunity for members of Parliament to emphasize the importance of our role as delegates on behalf of our constituents and as people responsible to exercise our own considered judgment. I would encourage all members to vote in favour of the bill.

[The Assistant Deputy Speaker, Anthony Rota]

Is the House ready for the question?

[Some hon. members]

Question.

[The Assistant Deputy Speaker, Anthony Rota]

The question is on Motion No. 1. A vote on this motion also applies to Motions Nos. 2 to 8. Is it the pleasure of the House to adopt the motion?

[Some hon. members]

Agreed.

No.

[The Assistant Deputy Speaker, Anthony Rota]

All those in favour of the motion will please say yea.

[Some hon. members]

Yea.

[The Assistant Deputy Speaker, Anthony Rota]

All those opposed will please say nay.

[Some hon. members]

Nay.

[The Assistant Deputy Speaker, Anthony Rota]

In my opinion the nays have it.

And five or more members having risen:

Pursuant to Standing Order 98, the recorded division stands deferred until Wednesday, March 8, immediately before the time provided for private members' business. The recorded division will also apply 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.

[The Speaker, 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 divided on Motion No. 1, which was negatived on the following division:)

Vote #210

[The Speaker, Geoff Regan]

I declare Motion No. 1 defeated.

I therefore declare Motions Nos. 2 to 8 defeated.