Genetic Non-Discrimination Act

An Act to prohibit and prevent genetic discrimination

This bill was previously introduced in the 41st Parliament, 2nd Session.

Status

Report stage (House), as of Feb. 14, 2017

Subscribe to a feed of speeches and votes in the House related to Bill S-201.

Summary

This is from the published bill. The Library of Parliament often publishes better independent summaries.

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.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, provided by the Library of Parliament. You can also read the full text of the bill.

Votes

  • Oct. 26, 2016 Passed That the Bill be now read a second time and referred to the Standing Committee on Justice and Human Rights.

Speaker's Ruling
Genetic Non-Discrimination Act
Private Members' Business

February 14th, 2017 / 6:35 p.m.
See context

Liberal

The Assistant Deputy Speake 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.

Motions in amendment
Genetic Non-Discrimination Act
Private Members' Business

February 14th, 2017 / 6:35 p.m.
See context

Liberal

Randy Boissonnault 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.

Motions in amendment
Genetic Non-Discrimination Act
Private Members' Business

February 14th, 2017 / 6:45 p.m.
See context

Conservative

Rob Nicholson 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.

Motions in amendment
Genetic Non-Discrimination Act
Private Members' Business

February 14th, 2017 / 6:50 p.m.
See context

NDP

Alistair MacGregor 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.

Motions in amendment
Genetic Non-Discrimination Act
Private Members' Business

February 14th, 2017 / 7 p.m.
See context

Liberal

Rob Oliphant 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.

Motions in amendment
Genetic Non-Discrimination Act
Private Members' Business

February 14th, 2017 / 7:05 p.m.
See context

Conservative

Michael Cooper 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.

Motions in amendment
Genetic Non-Discrimination Act
Private Members' Business

February 14th, 2017 / 7:15 p.m.
See context

Liberal

Anthony Housefather Mount Royal, QC

Mr. Speaker, I rise today in very strong support of the bill as reported back by the Standing Committee on Justice and Human Rights, which I chair.

I rise today in fervent opposition to the amendments brought forward by the member for Edmonton Centre. When the member for Edmonton Centre put forward these amendments, he stated that they had not been considered by the Standing Committee on Justice and Human Rights, which is true. They had not been considered because they would have been non-receivable at committee.

One does not move at committee to strike a clause. One votes against the clause when it is before the committee. Members of the Liberal Party, the Conservative Party, and the NDP on the committee heard the evidence and all of them decided to vote in favour of those clauses, thus rejecting the proposed amendments being put forward by the member for Edmonton Centre. I can only say that I hope the House considers the hard work done by the committee and the testimony of the witnesses who appeared before committee who told us how important this legislation is.

Do members know that 12% of Canadian women will one day be diagnosed with breast cancer? That sounds horrible, but if a woman has the BRCA1 mutation, she has a 65% chance of developing breast cancer by the age of 70. If a woman has the BRCA2 mutation, she has a 45% chance of developing breast cancer by the age of 70. There is also more than a 30% increase in the chance of ovarian cancer. These are dangerous things.

Imagine, if we can, that a 35-year-old woman's 40-year-old sister was just diagnosed with breast cancer and told that she has the BRCA1 gene. There is a history in their family of breast cancer. Their grandmother died of it, and so did their aunt. They are of Ashkenazi Jewish descent, which means they have a one in 40 chance of having this mutation, as opposed to a one in 800 chance in the general population.

There is a test available, easily accessible, to determine whether a woman has the BRCA mutation. It would stand to reason, would it not, that a woman would have this test done. After all, if she found out she was negative, she would breathe a huge sigh of relief, and if she found out she was positive, she could take preventive action. She could get enhanced screening. She could go on the birth control pill, which reduces the chance of developing breast cancer. Alternatively, she could have a radical mastectomy, which drastically reduces a woman's risk of getting breast cancer. There are other types of surgery as well.

It would stand to reason that it would be an easy decision, but in Canada, the decision is not so easy. The Standing Committee on Justice and Human Rights and the Senate committee before it heard testimony from people in this situation who chose not to have the screening. Among the reasons was that if a woman was looking for a job, she was afraid that a future employer would not hire her if she disclosed the result of this genetic test. A woman may have young children and be worried she would not get life insurance, disability or long-term care insurance or the insurers would charge her prohibitive rates which she could not pay. Women would worry knowing they have this gene merely because of discrimination, not only for them but close family members, perhaps their children.

Canadians should never have to worry about a decision that could save their lives. Medical professionals who testified before the justice committee said that a significant number of people in this situation refuse to be tested, like the 35-year-old woman I just described in getting a job, getting insurance, and then dying of breast cancer at age 40 because she was not screened for the gene and did not take preventive measures.

People should not die in Canada because they are afraid to take a genetic test. This does not happen in other countries. Laws exist to prohibit genetic discrimination in most of the western world. Criminal sanctions exist to prevent this in France, Austria, Germany, Norway, and Israel, among other countries.

The law before us seeks to amend the Canadian Human Rights Act and the Canada Labour Code, and to attach criminal penalties to require someone to submit to a genetic test or disclose results of a genetic test. The goal here needs to be to protect people across the country. The amendments to the Canadian Human Rights Act that the government supports are very nice, but they only apply to federal matters. This would leave the vast majority of Canadians unprotected. We need to be able to reassure Canadians from coast to coast to coast that they should not be afraid to get genetic testing for diagnostic or predictive reasons.

In order to prevent the social evil of genetic discrimination, we need to make use of Parliament's criminal law powers. Protecting people here is not an insignificant issue. As of November 2014, there were over 24,000 tests for over 5,000 conditions, and these are increasing exponentially.

Genetic tests will allow Canadians to live longer and healthier lives. Of all the witnesses that came before our committee, the vast majority were in favour of the law: medical associations, genetic associations, the Privacy Commissioner, and the Chief Commissioner of the Canadian Human Rights Commission. The only ones who disapproved were the insurance industry and the actuaries. Yet they have known about this concern for years and have done nothing to help resolve it.

Those who vote to defeat the amendments and support the law as drafted will be doing the right thing when it comes to policy.

Of course, the government has raised a separate issue that I want to deal with. It argues that the law is unconstitutional, as it seeks to regulate contracts and insurance companies, which fall under provincial jurisdiction. This position has been refuted by the majority of experts who testified before both the Senate and House committees, which included such luminaries as Bruce Ryder, Pierre Thibault, and Canada's foremost constitutional expert, Peter Hogg, who has been cited in over 1,000 court decisions.

Federal criminal law power falls under section 91(27) of the Constitution Act of 1867. The leading case to define the criminal law power was the Margarine reference of 1949. In that case, Justice Rand, of the Supreme Court of Canada, said that a law passed using Parliament's criminal law powers has to have as its dominant characteristic the putting in place of prohibitions coupled with penalties for a criminal public purpose, such as preserving peace, order, or security, or promoting health or morality. The court, importantly, recognized that social evils change over time and that Parliament has to be able to deal with them under the criminal law power.

In fact, over the last several decades, the court has emphasized that this is the broadest and most flexible of Parliament's powers, and we have used it in such varied areas as the Food and Drugs Act, the Tobacco Act, the Canadian Environmental Protection Act, and securities legislation. In the Assisted Human Reproduction Act reference several years ago, the court upheld very similar provisions criminalizing cloning or payment to surrogates.

I want to say that I saw the letter from the Province of Quebec, which cites only this one case to say that it may be unconstitutional, when in fact, that very reference came to exactly the opposite conclusion where the criminal law powers were upheld.

It is clear to me that the pith and substance of this law is to prevent the evils of genetic discrimination and not to regulate the insurance industry, which is not even referenced in the bill.

I want to cite Peter Hogg's brief, where he states:

A valid criminal law involves three elements: (1) a prohibition, (2) a penalty, and (3) a typically criminal purpose. In the proposed Genetic Non-Discrimination Act, all three ingredients are present. There is a prohibition of genetic discrimination, a penalty for breach of the provision, and the only purpose is to prohibit and prevent the evil of genetic discrimination.

Mr. Hogg concludes: “I agree completely...that the proposed law would be a valid exercise of Parliament's criminal-law power”.

When there is a dispute or debate about constitutionality related to criminal law in Canada, I would prefer to cite Peter Hogg over anyone else.

In conclusion, I strongly support the bill. I think it is right when it comes to policy. I think it is right when it comes to the question of federal-provincial relationships. Someone needs to take the lead in this country to prevent genetic discrimination. Let it be this Parliament.

Motions in amendment
Genetic Non-Discrimination Act
Private Members' Business

February 14th, 2017 / 7:25 p.m.
See context

Liberal

Jennifer O'Connell 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.

Genetic Non-Discrimination Act
Private Members' Business

October 25th, 2016 / 5:40 p.m.
See context

Liberal

Majid Jowhari 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.

Genetic Non-Discrimination Act
Private Members' Business

October 25th, 2016 / 5:50 p.m.
See context

Conservative

Mark Strahl 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.

Genetic Non-Discrimination Act
Private Members' Business

October 25th, 2016 / 6 p.m.
See context

NDP

Christine Moore Abitibi—Témiscamingue, QC

Mr. Speaker, it is my pleasure to be able to speak to this subject.

Clearly, this is not always a very easy subject to understand, but I think it is important in the context of the current system we are dealing with.

Many people are now faced with difficult choices; take insurance, for example. People are being asked to be more provident in general, to consider taking out life insurance or disability insurance so that they can protect their family in the event of adversity.

However, the problem this raises is that people have access to far more information on health and genetic diseases. For example, we know that a given gene could indicate a greater predisposition to a given disease. Often, nothing is certain. We know there is a greater predisposition in a given gene carrier, but we also know that nonetheless the person may never develop the disease in question.

Because of family history, more and more people are being asked to take a genetic test if they want access to life insurance or disability insurance.

People who refuse to take the test run the risk of being denied insurance. If you pass, it means you do not carry the gene, and you can therefore be insured and everything will be fine. However, if you discover that you do carry the gene, you run the risk of being denied insurance, not only from that insurance company, but also many others that you would approach later. All this because you carry a gene that predisposes you to a given illness that could be very serious, although there is no guarantee that you will actually get the disease.

This could put additional stress on people, because they will be afraid of developing a disease that they may never actually develop. This is very important. This has become increasingly important over time, with the evolution of medical technology.

When it comes to genetic discrimination, it is also important to make sure that people can continue to take part in genetic research without begin forced to disclose the results or findings of that research. It is therefore important to ensure the confidentiality of data.

My colleagues might not know this, but Quebec is quite interesting when it comes to genetic research. People who do family research realize that the population base in Quebec did not move very much for many years, unlike in Europe where there were regular unions between people from different regions or countries to consolidate alliances. In Quebec, the people did not move very much at all. This is extremely interesting for genetic research because it allows the researcher to establish family lineage and see how genetic diseases were transmitted within a same family. A significant amount of data is readily available, in other words, it is easy to find out who married whom. Family trees can be established for the vast majority of Quebeckers. A number of companies that do genetic research decided to use Quebec's population for their studies.

If the research participants are not sure that their data will be protected or whether they will eventually be forced to disclose to an insurance company the blood sample they might have provided 10 years ago, then this could seriously hamper the research.

This research helps detect the genes that cause certain diseases and contributes to medical advances. Accordingly, protecting people from discrimination also allows advances in research to continue.

Research participants are often compensated financially. I think that practice should continue provided this is really done for research.

However, when insurance is involved, we should consider the need to prevent people from obtaining financial compensation for agreeing to take a genetic test because that is a source of pressure. If an individual is offered a lower insurance premium on condition that they agree to take a test, that becomes a financial incentive. That is perverse and does not help resolve the issue of genetic discrimination. These are very important considerations.

Researchers need access to this data, as do health professionals when this information is found to be pertinent to the condition of their patients, so they can provide appropriate treatment. However, if health professionals have access to these test results, we must ensure that confidentiality is protected. If we do not protect patients' privacy, we run the risk that some people will refuse these tests, will not know that they are at risk of developing a disease, and will definitely not change certain lifestyle habits that are putting them at risk.

Genetic testing can play a preventive role in some respects. If we know that we are at risk because of an abnormal gene, we can work on the risk factors, because those can be mitigated.

When it comes to breast cancer, for example, some genes have been identified, but there are other risk factors, such as birth control pills. By reducing their exposure to such substances, people can reduce their risk, even if they know they may be genetically predisposed to that type of cancer.

I know that genetics may not be the most riveting topic. I would like my colleagues to be more upbeat and enthusiastic, but I must admit that we are discussing a highly specialized scientific field and that it is easy to get lost, particularly for those at home who have even less knowledge of health. That is why we, as legislators, need to protect them properly.

We have the opportunity to speak to experts who can explain to us the challenges associated with this sort of bill. We have the responsibility to protect Canadians, particularly when it comes to such a technical topic. It is not always easy for the people at home to follow what we are doing, but we have here a wonderful opportunity to better protect Canadians. We can ensure that no one ends up in a precarious personal or financial situation and that no one is prevented from protecting their family because they have been refused insurance.

It can even have an impact on their children. Imagine finding out from a genetic test that one has a genetic predisposition. Then imagine being denied insurance because one chose to have the test done. Then imagine one's children and other family members also being denied insurance. That would be a shame. People are increasingly being expected to take charge of things themselves and make arrangements for their own security, so refusing to protect them would conflict with what they are being asked to do.

I am therefore asking my colleagues to support this bill so it can be referred to committee and improved as needed. We must protect Canadians from genetic discrimination.

Genetic Non-Discrimination Act
Private Members' Business

October 25th, 2016 / 6:10 p.m.
See context

Vaudreuil—Soulanges
Québec

Liberal

Peter Schiefke 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.

Genetic Non-Discrimination Act
Private Members' Business

October 25th, 2016 / 6:15 p.m.
See context

Conservative

Luc Berthold 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.

Genetic Non-Discrimination Act
Private Members' Business

October 25th, 2016 / 6:25 p.m.
See context

Conservative

Alupa Clarke Beauport—Limoilou, QC

Mr. Speaker, I thank my colleague for his excellent and very informative speech. I also learned a thing or two this evening.

In the research that was done for him, did he see anything that might explain why Canada is lagging so far behind the other G7 countries? Can he explain this decade-long delay?

Genetic Non-Discrimination Act
Private Members' Business

October 25th, 2016 / 6:25 p.m.
See context

Liberal

Rob Oliphant 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.