This week, I changed much of the tech behind this site. If you see anything that looks like a bug, please let me know!

Genetic Non-Discrimination Act

An Act to prohibit and prevent genetic discrimination

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

Status

Awaiting royal assent, as of April 4, 2017

Subscribe to a feed (what's 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

March 8, 2017 Passed That the Bill be now read a third time and do pass.
March 8, 2017 Passed That Bill S-201, An Act to prohibit and prevent genetic discrimination, as amended, be concurred in at report stage .
Oct. 26, 2016 Passed That the Bill be now read a second time and referred to the Standing Committee on Justice and Human Rights.

Genetic Non-Discrimination ActPrivate Members' Business

March 7th, 2017 / 5:25 p.m.
See context

Liberal

Jennifer O'Connell Liberal Pickering—Uxbridge, ON

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

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

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

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

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

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

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

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

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

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

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

Genetic Non-Discrimination ActPrivate Members' Business

March 7th, 2017 / 5:30 p.m.
See context

Conservative

Luc Berthold Conservative Mégantic—L'Érable, QC

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

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

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

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

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

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

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

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

The Coalition goes on to provide examples.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Genetic Non-Discrimination ActPrivate Members' Business

March 7th, 2017 / 5:40 p.m.
See context

NDP

Don Davies NDP Vancouver Kingsway, BC

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Genetic Non-Discrimination ActPrivate Members' Business

March 7th, 2017 / 5:50 p.m.
See context

Liberal

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.

Genetic Non-Discrimination ActPrivate Members' Business

March 7th, 2017 / 6 p.m.
See context

Conservative

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.

Speaker's RulingGenetic Non-Discrimination ActPrivate Members' Business

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

Liberal

The Assistant Deputy Speake Liberal Anthony Rota

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

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

Motions in amendmentGenetic Non-Discrimination ActPrivate Members' Business

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

Liberal

Randy Boissonnault Liberal Edmonton Centre, AB

moved:

Motion No. 1

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

Motion No. 2

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

Motion No. 3

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

Motion No. 4

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

Motion No. 5

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

Motion No. 6

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

Motion No. 7

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

Motion No. 8

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Motions in amendmentGenetic Non-Discrimination ActPrivate Members' Business

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

Conservative

Rob Nicholson Conservative Niagara Falls, ON

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Motions in amendmentGenetic Non-Discrimination ActPrivate Members' Business

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

NDP

Alistair MacGregor NDP Cowichan—Malahat—Langford, BC

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Motions in amendmentGenetic Non-Discrimination ActPrivate Members' Business

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

Liberal

Rob Oliphant Liberal Don Valley West, ON

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

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

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

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

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

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

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

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

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

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

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

Is genetic discrimination a social evil?

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

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

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

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

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

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

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

Motions in amendmentGenetic Non-Discrimination ActPrivate Members' Business

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

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Motions in amendmentGenetic Non-Discrimination ActPrivate Members' Business

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

Liberal

Anthony Housefather Liberal 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 amendmentGenetic Non-Discrimination ActPrivate Members' Business

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

Liberal

Jennifer O'Connell Liberal Pickering—Uxbridge, ON

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

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

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

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

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

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

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

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

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

Genetic Non-Discrimination ActPrivate Members' Business

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

Liberal

Majid Jowhari Liberal Richmond Hill, ON

Mr. Speaker, I am pleased to speak in support of Bill S-201, the genetic non-discrimination bill previously introduced in the Senate.

I begin by thanking my colleague, the member for Don Valley West, for bringing this important bill to the House.

At the end of my speech, there will be four key takeaways. I will highlight some of the benefits of genetic testing, its importance for preventing life-threatening diseases, and its critical contribution to scientific research and innovation. I will then show how discrimination can hinder these benefits due to the lack of protective legislation.

To avoid repetitiveness, I will not speak directly about what specific legislative changes this seeks to make, as this has already been eloquently covered by my other colleagues.

In the 21st century, we have at our disposal highly advanced mechanisms to extract information and to further our knowledge. We have also learned innovative ways to utilize this knowledge, create new machines, develop techniques, build things, and save lives.

Significant breakthroughs in the medical field have benefited from this abundance of knowledge. Life-saving surgical procedures were improved and life-changing drugs have been developed and tested.

The next prominent medical breakthrough on the table is genetic mapping, acquired through genetic testing.

A genetic test is a test that analyzes DNA and RNA, or chromosomes, for purposes such as the prediction of disease, vertical transmission risks, monitoring, diagnosis, or prognosis, in other words, a test that provides potentially life-saving knowledge. There are currently 6,000 known genetic diseases. This means 6,000 possible causes of death and 6,000 possible individuals living a life of hardship.

Simultaneously, there are 48,000 genetic tests. This is not an insignificant number. This means there are 48,000 possible genetic cases to be discovered, 48,000 ways to save a life, or 48,000 opportunities to gain knowledge.

Taking a genetic test can save a life. Armed with this knowledge, people can take action to protect themselves. They can take preventive measures or monitor themselves for symptoms to catch a possible disease early on.

Due to the diversity and advancement of discoveries, there are many other opportunities for taking preventive action through genetic testing. For instance, there are tests for genes associated with heart disease, cancers, and kidney diseases, many of which are easily preventable through simple procedures, provided there is early detection and treatment.

Monitoring and treating at an early stage would likely save an individual from having to go through tedious medical treatment procedures, hospitalization, medication, and hardship.

I can go on and on about the many diseases that can be prevented with having early knowledge of an individual's genetic makeup, but I will not. The main takeaway is that research about the benefits of genetic testing to saving lives is certainly not lacking.

Furthermore, genetic testing increases the potential for significant innovations. For instance, the field of genetics and genetic testing is interacting with stem cell research, where scientists are exploring ways to replicate genetically mutated cells for the purpose of closely investigating the functions of the cell and how it leads to manifestation of the diseases.

A recent discovery has been the use of induced pluripotent stem cells, also known as IPS cells, for the modelling of human genetic diseases.

I am neither a doctor nor a medical practitioner, but what I know for sure is that scientists are on the verge of understanding diseases by replicating their functions. They are doing that by using stem cells.

In furthering their understanding of how a disease functions, how it manifests, and why it affects certain tissues and not others, scientists will be better equipped for further innovations to reversing the negative outcomes of genetically mutated cells.

I can easily imagine a world where individuals with a genetically mutated gene or an inherited genetic disease will no longer be affected by the genes simply because scientists have found a way to neutralize the negative impact of the disease. I may be getting ahead of myself here, it may be just wishful thinking, but one thing is for certain. Science, research, and innovation will always find a way, and I strongly believe in that.

In order to gain the ability to conduct their research, scientists need to conduct genetic testing. They need to be able to collect large samples of genetically mutated cells to validate their findings. This is where the problem emerges in Canada.

In Canada, there are strong gaps in the legal system where individuals who take a genetic test will likely suffer unnecessary consequences. Canadians who cannot be sure they will be protected by the law have chosen to forgo undertaking genetic testing. They have chosen to give up on the knowledge and understanding of their genetic heritage. They have chosen not to participate in clinical trials for the purpose of furthering medical advancement and possibly curing genetic diseases.

I am referring to the gaps that would be addressed when we pass Bill S-201. These gaps, if not closed, will allow for individuals to be subjected to discrimination: the gaps in the Canada Labour Code where employees are not protected from being fired or refused employment based on the results of a genetic test; the gaps in the Canadian Human Rights Act that do not recognize genetic discrimination as a violation of the human rights of Canadians; the gaps that do not protect an individual from being discriminated against before receiving goods, services, or entering into a contractual agreement; and the gaps that do not protect individuals from being forced to take or disclose the results of genetic tests.

If we do not pass Bill S-201 and close the gaps in our legislative system that allow for genetic discrimination, Canadians with an inherited genetic disease will less likely have the chance to learn about their disease prior to its symptoms. They will be fearful of losing their employment through coercion. Our medical and scientific research will likely suffer from having limited test subjects who fear that participating in a breakthrough clinical trial will lead to discrimination in other areas of their lives.

Bill S-201 does not seek to introduce newfound laws. It does not seek to change Canadian values. Bill S-201 simply seeks to close the current gaps in our legislative system and to align our values with our legislation. If our values are not perfectly embodied in our laws, how can we ensure this continuity?

Canada must close the legal gaps with regard to genetic discrimination. I strongly believe this bill will provide Canadians with much-needed protections with no insurmountable ramifications. I encourage my colleagues in the House to closely consider the bill, to consider its positive impacts on Canadian society, and to vote in its favour.

Genetic Non-Discrimination ActPrivate Members' Business

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

Conservative

Mark Strahl Conservative Chilliwack—Hope, BC

Mr. Speaker, it is a pleasure to speak again in the House on an issue of great importance to many of my constituents and to many Canadians. I will be supporting the bill.

The bill before us is Bill S-201, genetic non-discrimination act. The summary of the bill says that:

This enactment prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract or agreement with, or offering specific conditions in a contract or agreement with, the individual.

Essentially, the bill is to prevent discrimination based on genetic testing information to ensure that Canadians are not required to give that information to a third party and that this information cannot be shared without their consent.

I want to commend the member for Don Valley West on the speech he gave to introduce the bill in the chamber. I would recommend it to people who want to get a full appreciation of all the intricacies of the law and the amazing genetic testing and research that is out there.

We are in a new age, and the number of tests are expanding, as are the number of diseases that can be detected early on, and the number of genetic markers. The science is expanding every day. We want to ensure that Canadians are protected as more and more of our information, more and more of who we are, is exposed as a result of this testing.

The reason I wanted to talk about this is because of some families in my riding that have already experienced difficulties as a result of diseases they have been tested for, which have affected their ability to obtain life insurance. This is already happening. This is not some futuristic problem that may happen somewhere down the line. This is happening right now.

I would like to share a couple of stories from some people in my area. Quite frankly, I am not going to share their names or even the disease they are suffering from, because they are already concerned about what the repercussions would be for them if some of this information was revealed.

This is from a mom who says, “We chose not to get my son diagnosed, because he is basically healthy. I am looking to renew my life insurance and my agent was told by the underwriter that all patients with this disease have been denied insurance.” It should say whether they are symptomatic or not. She goes on to say, “It seems so unfair because this disease is typically not life-threatening. Disabling, yes, but I was seeking life insurance. If we tell sports organizations or community centres about my daughter's complicated medical history, they will not let us enrol. I need to not disclose health and safety issue so that she can live a normal life.”

Already there are some problems with obtaining life insurance.

Another family wrote to me and said, and this is about a hereditary disease in this family:

“For us, we had my son and I diagnosed before we knew anything, and before we knew we would never qualify for disability insurance. We have a very difficult time getting life insurance. I pay at least three times the amount for life insurance, even though my disease does not actually affect my lifespan. We are now in a predicament that our daughter is showing signs of this disease as well. We have to make a decision to get her tested. With testing, we can then qualify for things like the disability tax credit and possibly at-home funding and definitely special needs funding in school, but we are holding off because of the insurance implications. I worry how this testing and a diagnosis will affect her in the future. So we are paying out of pocket right now for her weekly physiotherapy sessions, $70 a week, and other therapies. We probably spend about $400 to $500 a month out of our own pockets so that we can protect her in the future, so that she is not discriminated against.”

Another person wrote to me about this and said that teachers and parents push for and are compelled to get kids outside the typical diagnosis, and funded, but this is going to follow them. It is going to help in some ways but it will hinder in others.

This is a choice that no parent should have to make. They should not have to be faced with the choice of getting funding for their kid, because then their kid will not be able to get life insurance when they are an adult. This is not the kind of country that we should live in, and it is something that we as parliamentarians should strive to protect people from. This is why the bill is so necessary.

There are other cases I think we need to look at. We have seen that mental health care has been an expanding field. This is something that we absolutely have to do more to address as governments at all levels.

I have talked to people who work in the House of Commons who have made it clear as well that not only are they not willing to come forward with their own mental health struggles because of the stigma surrounding it, but they are worried about their insurance and their health care plan. They are worried about the implications for them should they reveal a mental health issue. We encourage people to come forward, but we send a mixed message if we allow those people to be discriminated against for coming forward with that information and for seeking treatment.

This is why I was upset earlier. There is treatment available. There is a course of therapy available. There is funding available for kids, but parents have to make a choice right now, because they know from previous experience that if they reveal this to the wrong medical professional, the wrong insurance company, or even reveal it outside of the school system perhaps, that the child will pay a price for it, even though it will not affect their lifespan. This is not right.

Therefore, I am hopeful that as we study the bill, as we move forward to send it to committee and get more information out there, that we can talk about not only this area but other areas where perhaps our laws are not doing enough to protect those Canadians who are vulnerable, who could be helped but are afraid to seek help because of the repercussions.

I also want to mention, perhaps on a lighter note, that there are companies now that are advertising that we could just take a swab from our mouths and find out all about our ancestry; go to ancestry.ca and learn more about the makeup of our DNA. I think that, without the protections in the bill, we should be very concerned about that. This information is being retained. If we are not protecting people, what is to say that an insurance company might not ask if one has ever provided a DNA sample to determine one's heritage? If we do not protect those people, what is to say that it would not be a reason to deny insurance if they did not provide that information?

Again, it is more of a concern with this growing availability of DNA testing, of genetic testing. We need to be careful that we protect Canadians. We certainly need to stand up for those Canadians who are currently being negatively affected by the discrimination in the system.

I commend the member for bringing the bill forward, and Senator Cowan as well for starting this. The bill will have my enthusiastic support.

Genetic Non-Discrimination ActPrivate Members' Business

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

NDP

Christine Moore NDP 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 ActPrivate Members' Business

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

Vaudreuil—Soulanges Québec

Liberal

Peter Schiefke LiberalParliamentary 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 ActPrivate Members' Business

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

Conservative

Luc Berthold Conservative Mégantic—L'Érable, QC

Mr. Speaker, I too am pleased to rise in the House to speak to Bill S-201, an act to prohibit and prevent genetic discrimination.

The beauty of my work as a member of the House of Commons is that I have the opportunity to dig into a number of topics that affect Canadians and discover issues that I barely knew existed in my riding because no one had taken the time to inform me about them.

Bill S-201, introduced by Senator Cowan, opened my eyes to the very real dangers of genetic discrimination in Canada. I am pleased to share my thoughts on Bill S-201 with my colleagues.

During my research, I discovered that Canadians are not really legally protected from genetic discrimination. Across the country, people run the risk of being negatively impacted by genetic tests revealing potential genetic abnormalities. However, these tests are absolutely necessary. They can save lives. Thanks to modern medicine, these tests can forecast diseases a person might develop later on.

On the other hand, some people have a strong desire to know the risks, because there could be financial risks involved when it comes to the protection provided by insurance and all those other kinds of protection currently available to Canadians.

Do people have to choose between their money or their life? I think the answer is obvious: no one should ever have to make that choice. In my view, Bill S-201 responds perfectly to this concern.

Should someone who has a genetic disease have to pay higher insurance premiums? Should they be denied access to employment? The answer to those questions is no.

As I mentioned, we are all potential victims. There are nearly 6,000 genetic abnormalities that could cause diseases, and any one of us could be affected. Every month scientists discover new abnormalities that could affect our health. If there is no legislation in place, it could increase the cost of insurance or limit employment opportunities.

I will be quoting Ronald Cohn a few times in my speech, because I think he is a real expert on this matter. He treats children. I think we should listen to him.

Ronald Cohn, paediatrician-in-chief at The Hospital for Sick Children in Toronto, said that genetic discrimination is a real problem that will only grow with advances in technology.

The rate at which our doctors and researchers will find cures for our diseases will keep pace with the rate of technological advances. We hope these people work as quickly as possible to prevent others from becoming ill and in order to be able to treat people.

Unfortunately, as the rate of medical advances increases, some are eager to obtain these results in order to save money on the backs of the individuals who could develop these diseases in the future.

Another argument in favour of Bill S-201 pertains to the discrimination that other specific groups could be subjected to if certain ill intentioned people were to have access to test results.

Quebeckers in particular could be especially vulnerable because they lack genetic diversity. Researchers at the Centre de recherche du Centre hospitalier universitaire Sainte-Justine and the University of Montreal have shown that old stock Quebeckers for the most part are descendants of a limited demographic of only 8,500 French colonists. Today, there are several million Quebeckers. With respect to that group, if problems were discovered among the 8,500 colonists, today they are found in hundreds of thousands of Quebeckers.

Some regions of Quebec and their populations were isolated for approximately 400 years. The region of Saguenay—Lac-Saint-Jean is a striking example. In several other Quebec regions, we see the effect of this concentration of old stock Quebeckers, who are dealing with rare diseases inherited from their ancestors.

That is also the case in Newfoundland and Labrador. We are seeing the same phenomenon as in the Saguenay—Lac-Saint-Jean region. Remote locations and a lack of outside immigration for generations have also produced this sort of effect on the population. It is called the founder effect. It has created a number of genetic mutations that have led to hereditary diseases in communities in Newfoundland and Labrador and Saguenay—Lac-Saint-Jean.

The deadliest disease is arrhythmogenic right ventricular dysplasia. Speaking of subjects I never thought I would raise in the House, this is one of them. This inherited heart disease can result in sudden cardiac death. There are 64 specific families in Newfoundland and Labrador that are carriers of this disease and 80% of the men in these families with what might be called the “malevolent gene” will die before the age of 50. Many people show no symptoms of the disease.

If an insurance company sees test results that show that these people carry this “malevolent gene”, would they sell them life insurance? That is a question we need to answer because, if these companies are allowed to use genetic testing, they may decide not to sell these people life insurance. People who could potentially avoid dying before the age of 50 by taking the test may not want to take it for fear that their insurance company might get a hold of the results.

Once again, we are left with an illogical and immoral choice. It is not right that people should have to choose between doing everything they can to prevent their potential death and making sure that their family is taken care of financially after they are gone. However, that is the dilemma that these people are facing. Would an employer offer a long-term position to someone with such a disease? That is another question we need to ask.

Some first nations communities in northern British Columbia are genetically predisposed to certain serious illnesses. For example, some people in those communities are 20 times more likely than the average Canadian to have a genetic syndrome that manifests as a terrible hereditary heart disease.

Those are the dangers we are facing right now as a people and as Canadians because our laws do not provide for that kind of protection. Between 10% and 30% of patients refuse genetic testing because they fear genetic discrimination against themselves or their family members. Mr. Boudria, a former Liberal minister who now speaks on behalf of Ovarian Cancer Canada, hit the nail on the head with the following statement:

Medically, the current rules are not good enough. Some people would rather not have genetic testing done so that they will not be questioned.... The test could save their lives. We know that cancer is easier to cure if caught early.

That is why we must take action.

In closing, I would like to talk about other circumstances under which people refuse. Many families refuse to have their children tested because they fear the consequences with respect to insurance. Dr. Ronald Cohn, paediatrician-in-chief at The Hospital for Sick Children in Toronto, said the following:

Finding yourself in a situation where you offer somebody a test and then they say “I would love to do it but I'm afraid to,” it's somewhat paralyzing.

It is incredible.

Canada is lagging behind. We are the only G7 country that does not have legislation against genetic discrimination. Our neighbours to the south adopted similar legislation almost 10 years ago. France and Great Britain were among the first to adopt or amend their legislation nearly 20 years ago.

Elsewhere in the world, 50 or so countries regulate how genetic data can be used, and 35 of those countries explicitly prohibit genetic discrimination in employment. What is more, in 1997, the United Nations Educational, Scientific and Cultural Organization advocated for all states to provide protection from discrimination based on genetic data or genetic characteristics.

In closing, we support this bill because it is essential. I would also like to acknowledge the excellent collaboration of a participant in the parliamentary internship programme, Jeanette Carney. She provided excellent research for drafting these notes. I wanted to acknowledge that before you, Mr. Speaker, and before my colleagues.

Genetic Non-Discrimination ActPrivate Members' Business

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

Conservative

Alupa Clarke Conservative 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 ActPrivate Members' Business

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

Liberal

Rob Oliphant Liberal Don Valley West, ON

Mr. Speaker, I want to do two things in these closing minutes, and the first is to thank colleagues from both sides of the House for their comments, their speeches, and their very strong defence of the bill. There are few opportunities we have in the House to actually share common concerns and do something for all Canadians. Some of this is happening on Bill S-201, and I want to commend hon. members.

I also want to thank the members who spoke to me personally about the bill. Men and women have come to me with stories about themselves, their children, and their parents, particularly about illnesses they have or concerns they have faced in their own lives and have not felt free to tell others about because of the fear of genetic discrimination. They know who they are, and their stories will be kept entrusted with me, and I thank them for that privilege. I hope the bill will be dedicated to each of them and every Canadian who fears the possibility of discrimination if they get a genetic test.

I want to also thank Senator Cowan, from the other place, as has been said, and Barb Kagedan, his wonderful assistant, who has shepherded the bill, not just these months but for many years, and has brought passion and intelligence to this House from the other place and has made my work much easier.

Senator Cowan and Bev Heim-Myers, the president of the Huntington Society of Canada, recently received a very prestigious award from the American Society of Human Genetics. Bev is also the chair of the Canadian Coalition for Genetic Fairness. They have worked together as health groups, patient organizations, and charities to ensure that parliamentarians can learn, as one of my hon. colleagues said, things we did not know before we came here.

This tribute today is really in their name. It is something they have done and brought to the attention of this House through the Senate, and I think we owe them all a strong vote of thanks. That is the first thing I want to do.

The second thing I want to do is remind the House of the integrity of the bill. There are three parts to it: the genetic non-discrimination act, changes to labour legislation, and changes to the Canadian Human Rights Act. Each part of it is essential to ensure that the bill will be enacted in a way that Canadians can trust that they can get a genetic test to ensure that their health care is absolutely optimum.

Medicine is changing. Twenty-first century medicine is about genetic medicine. It is called targeted medicine, sometimes personalized medicine. It is the nature of medical practice as we know it today. It is revolutionary.

We were asked why Canada lags behind in this, and I think the reason is that we have messed around with a concern about provincial and federal jurisdiction. This House has the opportunity to act and to act strongly and clearly. We should give the provinces the opportunity to comment on the bill and act with them and on behalf of all Canadians to ensure that this act has the kind of teeth it needs to protect them in the most vulnerable place: their health, their existence.

There are parts of this job that we love and parts that we do not love as much. The part I love the most is that we have the opportunity to actually affect Canadians' lives. We have a moment in this House, with this act, to make a change that can actually change the lives of millions of Canadians, who can, with trust and confidence, go to their physicians and get the tests they need so that their clinicians, the practitioners who help them, can have the very best tools.

One of the great privileges I have had is to meet with Dr. Ronald Cohn, Stephen Scherer, and other researchers across this country from coast to coast to coast. They are aching for a piece of legislation so that they can help their patients in ways they are concerned they are not able to do today.

I thank the House for considering the bill. I look forward to tomorrow. I hope members stand and support it and make Canadians a healthier population.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 5:30 p.m.
See context

Liberal

Rob Oliphant Liberal Don Valley West, ON

moved that Bill S-201, An Act to prohibit and prevent genetic discrimination, be read the second time and referred to a committee.

Mr. Speaker, it is a great honour to be here today as we consider in the House the first bill that is coming to us from the Senate, and I am proud to be its sponsor.

This legislation was first introduced by Senator James Cowan and has already received unanimous support in the other place. Today I hope to convince members of this chamber to give it the same enthusiastic support in the House and thus change the lives of millions of Canadians.

Genes are the building blocks of our lives. They tell us who we are and where we come from, our inherited strengths, and our susceptibilities. Our genetic makeup is more fundamental than our ethnicity, our gender, our race, or even our sexual orientation. It is the foundation of who we are as human beings.

Since the discovery of the human genome, we know that our genetic codes contain information that can prevent illness, thwart disease, improve or even save lives. The late U.S. senator Ted Kennedy observed the discovery of the human genome would affect the 21st century as profoundly as the splitting of the atom or the invention of the computer in the 20th century.

When Senator Cowan first introduced the bill in 2013, there were only 2,000 genetic tests available. Now today, after three and a half years, there are more than 48,000 genetic tests for diseases like Huntington's disease and early onset Alzheimer's. There are tests for genes associated with ALS, kidney disease, breast and ovarian cancer, and certain forms of colon cancer, and the list is growing at a truly exponential rate.

Canadian scientists last year discovered the gene that was associated with cystic fibrosis. Just this summer researchers have found the gene associated with metastatic, fast-moving prostate cancer, explaining why with some men prostate cancer moves slowly and in others it advances very quickly, perhaps informing treatment or helping people determine their options. This probably explains why my father lived for over 20 years with prostate cancer and yet some of his friends died after only 18 months.

Canadian health care institutions conduct tens of thousands of these tests each year. The information gleaned from them allows Canadian researchers and physicians to diagnose diseases, guide treatment, inform reproductive planning, and warn of adverse drug reactions. They are also used for clinical trials by innovative pharmaceutical and biotech companies to find new treatments for old diseases.

In most cases having a genetic makeup does not mean that a person will automatically or even necessarily develop a disease or condition, only that one might. However, knowledge is power and this opens up the possibility of taking concrete steps to reduce the possibility or the chance that a disease or a condition will develop in the first place.

Perhaps the most famous example of this is actor Angelina Jolie. People will probably know that her mother died of cancer. When she looked at that, she decided to undergo the test and determined that indeed she was a carrier for the BRCA1 gene. Women with this genetic mutation have as high as 87% chance of developing breast cancer and as high as 60% chance of developing ovarian cancer. Ms. Jolie opted to have preventative surgery and reduced her chance of getting breast cancer from 87% down to 5% and reduced her chance of getting ovarian cancer by some 98%. She wrote in The New York Times, “I can tell my children that they don't need to fear they will lose me to breast cancer”.

The benefits of genetic knowledge should be not limited though to celebrities. Every one of us in the House may want to undertake a genetic test at some point. Famous or not, none of us should be denied access to a genetic test and none of us should be afraid of having a genetic test for fear of discrimination.

In the course of working on this legislation with Senator Cowan, I came to know the story of a young man who was only 24 years old who had family members who had tested positive for Huntington's disease. Given that kind of family history, he had to weigh out his options about whether he should actually have the test to see if he carried the same genetic makeup. He took the difficult decision to have that test and he shared that decision with his employer.

On a Friday, he found out he had tested positive and, indeed, had the gene. His employer asked him what the result was, and he was honest and told him. The Monday following, he went to work and was fired. He was a video editor. His employer was afraid, for some reason, for his equipment.

Of course, this young man did not have the disease, does not have the disease, and will likely not develop any symptoms for this disease for maybe as many as 20 years. Huntington's is an area of huge research right now. There are clinical trials going on right now for drugs which would perhaps delay the onset even further. However, he is being discriminated against now for a disease he might never have if medical science works the way it should.

This bill is inspired by the belief that all Canadians should profit from the advances in genetic science. To achieve this goal, the genetic non-discrimination act seeks to ensure that the knowledge that we have through genetic research is protected from potential abuse and that there are as few impediments as possible to getting tested.

In Canada, unlike most western countries, if one has a genetic test, there is no protection from a third party using that information, those test results, perhaps to one's detriment. This is the problem of genetic discrimination and that is what Bill S-201 seeks to address.

Genetic discrimination can take many forms. As in the first story, it can take the form of employment determination, denial of a promotion, denial of child custody, and there are cases of this, an increase in insurance premiums, or even cancellation of an insurance policy. Each one of these is a heartbreaking story.

Dr. Ronald Cohn is a clinical geneticist, now pediatrician-in-chief, at SickKids hospital in Toronto. He testified in the Senate about parents feeling they had to refuse genetic testing, even though it could point to the best way for treatment or care, for fear that their child, who may be sick, could face future discrimination. He spoke of parents who had spent years searching for diagnoses, who broke down in tears as they had to decline genetic testing because of concerns over genetic discrimination.

He described one young patient whose symptoms were consistent with two different diseases, and the only way to promote the diagnosis and get the right treatment was to actually have a genetic test. However, the parents felt unable to consent for fear of discrimination. Dr. Cohn told senators that without the test, he could not properly care for the young girl. Without legislative protection, her parents could not agree to have the test done. This is not a choice or decision a parent should ever have to make.

Canada is one of the few industrialized countries in the world without some sort of legislative protection for its citizens' genetic information. Our laws lag behind Austria, Belgium, Bulgaria, Denmark, Finland, France, Germany, the Netherlands, Norway, Portugal, and Spain. The United States has had this sort of anti-discrimination law in place over 13 years, with the federal genetic information on discrimination act. Twenty-four American states have passed additional legislation limiting the use of genetic information by life, disability, and long-term care insurers.

Renowned award-winning genetic researchers with international experience are expanding their reach of precision, personalized or targeted medicine. The future of medical care is rapidly changing. There has been no significant advancement in anything medical since the discovery of the human genome. Without protection, Canadians will not benefit from these huge advances in medical science. This affects the health of every Canadian that we are here to serve. It affects the future of medical science in our country. Personalized or targeted medicine is the future of medicine and Canadians deserve protection to ensure they get the best care, and that we do not waste health dollars and ensure we have the best public and personal health.

I call Bill S-201 a three-legged stool. Each piece of the legislation is crucial to fighting discrimination. They are, in order of importance: the proposed new genetic non-discrimination act, or what I am now calling the GNA to fight discrimination against RNA or DNA; then the amendments to the Canada Labour Code; and, finally, amendments to the Canadian Human Rights Act. Each part is essential. This bill cannot be arbitrarily disassembled any more that a stool can lose a leg or two and still support us.

Principally, the very first thing is that the bill would create a new genetic non-discrimination act, a GNA, with three new criminal offences. It would prohibit requiring anyone to undergo a genetic test, or to disclose the results of a genetic test, as a condition of providing goods or services. It would also prohibit the collection, use or disclosure of the results of genetic testing without that person's consent. Of course, the bill contains exemptions for healthcare practitioners and for research.

To my mind, this is not controversial. None of these prohibitions are controversial and they are urgently needed. The new genetic non-discrimination act is the single most important part of this bill. The GNA is necessary to fight DNA or RNA discrimination.

It states clearly and unequivocally that society condemns genetic discrimination. It is unacceptable behaviour, and it will not be tolerated. The criminal sanctions are set high to serve as an effective deterrent. The bill does not target sectors or industry; it targets bad behaviour. It names the bad behaviour and ensures that there are laws to protect people against those behaviours.

Our job as federal legislators is to put into place laws that will protect Canadians. We have the criminal law power to do that work. That criminal law will state what is unacceptable conduct, and then prohibit that conduct. That is what Canadians expect us to do on their behalf.

Second, Bill S-201 would amend the Canada Labour Code with a set of amendments, providing a complaint procedure for employees in federally regulated workplaces who encounter genetic discrimination. I know this number is not large, but nonetheless they are important and this could serve as a model for other jurisdictions.

Last, there is a set of amendments that adds “genetic characteristics” as a prohibited ground of discrimination under the Canadian Human Rights Act.

This is a three-legged stool with an act, with criminal penalties, changes to the Labour Code, and changes to the Human Rights Act, holding us up as a robust piece of legislation that will protect our rights as Canadians and ensure the best health of Canadians.

It is interesting. I have heard that there is some sense that we should not have a stand-alone act, but it is fine to simply put this into the Canadian Human Rights Act.

Peter Engelmann, a labour lawyer and human rights advocate, former counsel to the Canadian Human Rights Commission, told senators why, in his opinion, the specific protections as were proposed in the genetic non-discrimination act were critical, and why just amending the Human Rights Act alone was not sufficient.

The reality is the way human rights legislation works is it is reactive instead of proactive. It puts the burden or the onus on complainants. They bear the costs. They bear the burden and the stress of taking a complaint forward, which is after the fact not before the fact. There are not significant deterrents in it. Sometimes people are very vulnerable in difficult positions in which they should not have to be.

The act would ensure we have, together, one act that would make it a crime against Her Majesty, against the state, and thus would ensure that we would have adequate protections to do that.

Senator Cowan presented an earlier incarnation of this bill and tested its constitutionality. The Senate has deemed, indeed, that we do have the federal power to enact this sort of legislation to ensure that Canadians are protected.

Law professors, experts, will disagree. Essentially, I hope the Standing Committee on Justice and Human Rights will examine that thoroughly. I am convinced it will find that we do have the federal authority, the federal power, as we do in other areas of legislation, to enact this sort of bill.

The federal government has that power in securities, in tobacco marketing and other things under so-called provincial jurisdiction, however, we believe this is the right thing for the federal government to do.

Canada is behind. Canada needs to step up to the plate. Canada needs to do this now. We are behind and we need to act. This is our chance, as legislators, to bring better health to Canadians and ensure that Canadians have access to genetic tests. We, this day, will be able to save lives.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 5:45 p.m.
See context

NDP

Pierre Nantel NDP Longueuil—Saint-Hubert, QC

Mr. Speaker, I congratulate my colleague on his involvement in such important causes.

My colleague compared the bill to a three-legged stool, so I wonder if he can offer any reassurance that each of the three legs will be of equal importance. Nobody wants a wobbly stool. Should we be at all concerned about one of those legs being less sturdy than the others? I am thinking of discrimination against individuals, specifically.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 5:45 p.m.
See context

Liberal

Rob Oliphant Liberal Don Valley West, ON

Mr. Speaker, as the bill stands now, there are three legs that would hold up equally. The reality is that if we take one out, though, the stool would not hold up.

The Canada Labour Code amendments are there principally because we have the responsibility, in the federal legislature, to ensure that federally regulated employees, whether they work in a bank or anywhere, have a means to make sure they are not prevented from having a genetic test for discrimination.

The Canadian Human Rights Act is an important thing; necessary, but not sufficient. To make this a robust piece of legislation, I honestly believe we need a genetic non-discrimination act, which would work in conversation with others but would largely serve as a deterrent.

My hope is that there be no convictions under the bill; that the bill would be robust, would stand, would ensure that Canadians have access, and would ensure Canadians are never discriminated against, because employers and others know the costs of discriminating.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 5:45 p.m.
See context

Liberal

Lloyd Longfield Liberal Guelph, ON

Mr. Speaker, I thank my hon. colleague for an excellent, detailed, and passionate presentation.

Last week, I spoke with members of the Huntington Society. They also pointed out that we are behind, that we are the only G7 country that does not protect genetic information.

Would the hon. member explain why it is important that Bill S-201 have criminal penalties in addition to the legislation we are putting forward?

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 5:45 p.m.
See context

Liberal

Rob Oliphant Liberal Don Valley West, ON

Mr. Speaker, I thank the hon. member for the question because I think it raises an important point. I was a member of a human rights commission and then, at one point, chair of the commission. We recognized that it was an important conversation about human rights, and that was the nature of that human rights discussion, where we would use alternative dispute resolution. We would have a caseworker and we would work on those things.

We agree that is possible as part of the bill but, more important, we think we need to have a robust, strong piece of legislation that would have criminal penalties that would be commensurate with the actual life-and-death nature of this discrimination. People have to have knowledge. Knowledge is power. That power can help them actually save their lives and the lives of their children. This disproportionately affects some communities in Canada. That is what I have begun to learn, that there are pockets in Canada that have particular genetic makeups that actually mean they are more at risk for having certain diseases. It could be the Saguenay-Lac-Saint-Jean area, Cape Breton, the Mennonite community, or the Ashkenazi Jewish community. There are different communities that have particular problems, in a genetic way. The bill would wake people up, cause them to take control of their own health care, and actually move us, as a society, to a more sustainable health care system. It is targeted medicine, so that people would get the right tests, at the right time, the right treatments, and the right options.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 5:50 p.m.
See context

Conservative

Karen Vecchio Conservative Elgin—Middlesex—London, ON

Mr. Speaker, I am truly honoured to stand here today at the beginning of a new session to speak on such important legislation, Bill S-201, an act to prohibit and prevent genetic discrimination. I thank the member opposite from Don Valley West for sponsoring this Senate bill that allows us to have active debate on this issue.

I was first made aware of this piece of legislation from a visit by Ovarian Cancer Canada in May. The regional director from Saskatchewan and Manitoba, along with ovarian cancer survivor, Lauren Richards, came to my office to discuss their types of cancers, their concerns, and what we as members of Parliament and government can do to help the thousands of victims of this terrible disease.

Through our discussion, I was advised that ovarian cancer is the most fatal cancer for women in Canada and that 2,800 women would be diagnosed this year, with an additional 1,750 dying from this disease. Unfortunately, because of the symptoms of ovarian cancer, the diagnosis can be very confusing and disease go undetected. Lauren advised me that many physicians diagnose this disease as a bladder infection. Meanwhile the disease continues to spread. Because of this, the mortality rate is such that more than half of the women die within five years. The words for this are “just brutal”.

My own office assistant, Kim, was diagnosed in 2000. Luckily she is with us today, as it was detected very early and she has not just become one of those statistics. Kim is now tested annually, as doctors know of her medical history, but the question is what can we do to help people like Kim and Lauren, women who have this disease and who, in over 50% of cases, will die in five years? The answer is genetic testing. Genetic testing would not only provide an individual with a sigh of relief to find out whether or not they are a carrier of a mutated gene, but it would also allow individuals to get the appropriate care and treatment to deal with the diseases.

In 2015, former justice minister MacKay tabled similar legislation prior to the fall election. This legislation was especially supported by the Jewish community, which has a disproportionately higher number of genetic markers. I was made aware of this during my meeting with officials of Ovarian Cancer Canada, who advised me that their own colleague would not have this testing done, due to insurance concerns.

When preparing for speeches, many of us in the House read a lot of news articles and studies to do with the issue in question. One case from California in particular came to my attention. A young boy was transferred out of his school because of the results of his genetic testing. He had tested positive for genetic markers for cystic fibrosis but did not have the condition. This is a clear case of discrimination.

I believe that when we look at this issue we need to decide if it is about the quality of life and the betterment of our health decisions or the ability to discriminate. Currently we are the only G8 country that does not have legislation to protect our citizens from genetic discrimination. Similar legislation in the United States, Australia, the United Kingdom, and New Zealand, to name a few, already includes safeguards for their citizens.

I understand the concerns of insurance companies that have spoken out against this legislation, but in countries like the U.K. they have come up with solutions and proposals. Studies that have looked at the impact on the insurance companies, who are concerned about people over-insuring themselves to secure a large payout for their family when they pass on, have found that over-insurance is not truly an issue, as over 97% of those companies' policies fall below those considered limits. I recognize that the regulation of insurance companies is a provincial responsibility, but I believe that as a federal government we can set the tone for human rights across Canada.

During my preparation for this speech, I read the different proposals forwarded to other governments by insurance companies. Rather than saying that this is a provincial regulation, we can work collaboratively to make sure that we are protecting Canadians.

It is not just for diseases like ovarian cancer and breast cancer, but for people who have parents with Huntington's disease, heart disease, and many other diseases, for which this genetic testing would be very helpful. There are so many uses for this type of screening to help people make their choices about their health care needs. Personally, I have a mother who had a triple bypass, and whose mother and family members had a number of heart disease issues, including my aunt, uncle, and great uncles.

Just a couple of years ago, my sister, a very active and fit 48-year-old woman at the time, was diagnosed with a heart condition and now has a defibrillator implant. For me personally, this does cause concern. Do I have the same issue or will I find out that I do like my sister did when she passed out in her family's hallway? Will my daughters and sons have this condition? Does my husband carry the gene for prostate cancer like his grandfather?

As the leader of the Senate Liberal caucus said in January 2016, scientists here in Canada are unlocking keys to our DNA and the results are revolutionizing medicine. As he indicated, just because individuals have the markers, it does not mean they will develop the condition, but just knowing can change so many things for them, such as lifestyle, diet, exercise regime, and particular medications or perhaps surgery as necessary.

An extremely popular example of this is Angelina Jolie. When she discovered she had a genetic disposition for breast cancer, she dealt with it by having a double breast mastectomy. As a mother caring for many children, she had the hardships somewhat relieved for her. This is an example of providing peace of mind not only for her but also for her children.

As I indicated earlier, I had the opportunity to speak to an ovarian cancer survivor who luckily had been diagnosed early. However, we must keep in mind that misdiagnoses can occur and do, especially with these types of cancers. The ability to save a life is crucial.

With respect to discrimination, there have been situations in Canada where people have lost their jobs following positive test results for specific diseases. People have lost out on promotions and have come under scrutiny on the job due to their potential conditions, and it is not just with respect to employment insurance. Due to positive results, families have not had the opportunity to adopt children. Instead of having the opportunity to raise a family, individuals go without, and they may not even have the condition but have just tested positive for it.

It just does not make sense for us as parliamentarians to not support such an important piece of legislation. We need to set the bar and we need to set that now. We need to do what is best for Canadians, and supporting this legislation is just that. I urge all members to take an important stand and support Bill S-201, an act to prohibit and prevent genetic discrimination. I urge members to look at the health of people and to allow provincial regulators to find solutions to assist Canadians who have tested positive for gene markers. I urge Canadian researchers and our medical professionals to work together to encourage testing, especially in cases where there may be something that could be detected, which would allow Canadians to make their own personalized health care plans.

I would truly like to thank Ovarian Cancer Canada for coming to my office and informing me of what we can do and how we can be part of the solution that would make a difference for all Canadians, now and in the future.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 5:55 p.m.
See context

NDP

Don Davies NDP Vancouver Kingsway, BC

Mr. Speaker, I rise today to speak to Bill S-201, an act to prohibit and prevent genetic discrimination. I am proud to indicate the full support of the NDP caucus for the bill's goals and principles.

I will take a moment to congratulate my hon. colleague for Don Valley West who, as long as I have been in the House, has been a paragon in standing up for the principles of human rights and anti-discrimination in a number of areas. I congratulate him on his stewardship of this bill.

Originally introduced and passed in the Senate as a private member's bill, the last version of Bill S-201 proposes to make amendments to the Canada Labour Code and the Canadian Human Rights Act. It would also introduce a series of new offences and penalties for genetic discrimination in contracts and in the provision of goods and services.

New Democrats strongly believe that the federal government must work to prevent genetic discrimination in order to ensure that Canadians can make use of such testing without fear to improve their health care planning and treatment options.

New Democrats are proud to stand with health care providers, medical ethicists, community organizations, and the overwhelming majority of Canadians in support of genetic privacy and in opposition to discrimination based on genetic information. This is why New Democrat MPs introduced legislation similar to Bill S-201 on three previous occasions, including former MPs Libby Davies, Bill Siksay, and Judy Wasylycia-Leis.

It has been said that New Democrats are Liberals in a hurry. In this case, it is certainly true that the NDP was ahead of the game. Frankly, if Parliament had followed the NDP lead in 2010 when this legislation was first introduced by NDP MPs, Canada would not be the only G7 country without this important protection today.

By its very nature, our genetic information is deeply personal. Genes are the basic building blocks of heredity in all living organisms. They are made up of DNA, and DNA contains the instructions for building proteins that control the structure and function of all the cells that make up our bodies. Privacy protection is therefore an essential element of maintaining public trust in the value of the rapidly proliferating field of genetic testing and treatment.

Like many other significant innovations, the information made available through genetic testing offers both tremendous benefits and potential risks.

On the one hand, genetic information can be used to diagnose genetic conditions and identify predispositions to genetic disease. This helps folks seek treatment early and adopt lifestyle habits to minimize the possible harm of a genetic condition. It also helps health care professionals tailor therapies to a patient's specific genetic profile.

On the other hand, without appropriate legal restraint, genetic information can be misused to subject Canadians to discrimination based on the traits revealed by genetic testing. For example, if an insurance company learns that an applicant is at higher risk for certain disease, this may affect the cost of the policy it is willing to offer that person, if it is offered all. If an employer knows that an applicant is at higher risk of developing a genetic condition or illness, the employer may be unwilling to hire that person or continue to employ him or her.

Currently, there is no law in place that specifically protects Canadians' genetic privacy. Only a voluntary code of conduct governs how the results of genetic testing can be used by employers and insurance companies, and that is not good enough.

Moreover, existing Canadian privacy and human rights legislation is wholly inadequate to address genetic discrimination, because it fails to address cases of “future disability, perceived disability, or imputed disability”, and it fails to proactively prevent discrimination. Instead, it offers remedies after the discrimination has already occurred. The person who is discriminated against must make the complaint and then seek appropriate legal action, which is often a costly and time-consuming endeavour. This puts Canada out of step with our country's major industrial counterparts.

As Richard Marceau, general counsel and senior government advisor at the Centre for Israel and Jewish Affairs, has pointed out:

Canada’s wait-and-see approach has resulted in a serious legislative gap that no longer exists in any of our G7 partners or in countries like Israel, which enacted comprehensive safeguards as far back as the year 2000.

In liberal, democratic societies in a market economy, the 14 years that followed clearly indicated that legislative protections would not destroy the insurance industry, no more than they would cause employers to go bankrupt. Experience shows that these fears are unfounded.

Canadians from coast to coast to coast expect their government to take immediate action to close this gap and protect their genetic privacy, and none more so than those directly touched by genetic conditions and illnesses. I recently had the honour of participating in Ovarian Cancer Canada's Walk of Hope at Queen Elizabeth Park in Vancouver. Ovarian cancer is the most fatal women's cancer. In Canada every year it claims approximately 1,800 lives, and nearly 2,800 Canadian women will be newly diagnosed with the disease every year. Because it is often caught in its late stages, 55% of women diagnosed with ovarian cancer will die within five years. Although existing research has confirmed a strong link between genetics and ovarian cancer, women may fear testing and some do not get testing because their genetic privacy remains unprotected.

According to Elisabeth Baugh, the CEO of Ovarian Cancer Canada:

While all women are at risk for ovarian cancer, women with specific gene mutations are at greater risk than others. Knowing about your genetic makeup enables informed decisions about preventive action.... To support this, we need assurance that genetic information won’t be misused by employers or insurers.

This view has been echoed by Ovarian Cancer Canada's partners in the Canadian Coalition for Genetic Fairness, an alliance of organizations dedicated to establishing protections against genetic discrimination for all Canadians. These include the ALS Society, Alzheimer Society, Canadian Breast Cancer Foundation, Canadian Congenital Heart Alliance, Cystic Fibrosis Canada, the Canadian Organization for Rare Disorders, Huntington Society of Canada, the Kidney Foundation of Canada, Multiple Sclerosis Society of Canada, Muscular Dystrophy Canada, and many others. These groups advocate on behalf of the families directly affected by genetic conditions and illnesses, folks who are witnessing the disturbing prevalence of genetic discrimination first-hand.

According to the coalition:

Cases of genetic discrimination have been documented in Canada and are continuing to grow as more genetic information becomes available.... To assume that someone’s DNA will result in a disease or disorder is faulty, misleading...speculative [and dangerous].... Every person has dozens of genetic mutations that could increase or decrease his or her chance of getting a disease such as diabetes, heart disease, cancer, Parkinson’s or Alzheimer’s disease.

Indeed, a groundbreaking study from the University of British Columbia documented precisely how widespread this discrimination has become. UBC researchers surveyed 233 Canadians with a family history of Huntington's but no symptoms of the disease. They found that nearly 30% of subjects experienced unfair treatment at the hands of insurance companies.

It is clear that by prohibiting genetic discrimination Canadians would be empowered to make more-informed choices about their own health without having to fear negative repercussions. New Democrats believe that no Canadians should ever have to forego critical testing because they lack protection from discrimination. That is why New Democrats strongly support the principle behind Bill S-201. If passed at second reading, we will work hard to engage in a rigorous study of this legislation at committee because it is vitally important that we get the details right. Countries that have enacted laws to prevent genetic discrimination have taken various approaches, and we should learn from each experience to craft a comprehensive made-in-Canada approach to genetic privacy.

All Canadians are affected by genetic discrimination, and leadership is needed at the federal level to ensure that genetic testing is only used to improve and save lives. I hope that the federal government will work with the provinces and territories because many employers and insurers in this country fall under provincial jurisdiction and we want to see the legislation and approach replicated at all levels so that every Canadian, no matter if he or she works in a provincially or federally regulated workplace or regardless of where he or she seeks insurance, is covered by this bill.

I want to conclude by saying that there is one improvement to the bill, which I will identify right now. While it would prevent discrimination, we need to ensure that insurance companies are not able to offer incentives to people to get a lower premium on insurance if they voluntarily subscribe to genetic testing. Those are the kinds of positive proposals the NDP will bring to the table. I congratulate my friend and the government for bringing this important legislation to the House.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 6:05 p.m.
See context

Charlottetown P.E.I.

Liberal

Sean Casey LiberalParliamentary Secretary to the Minister of Justice and Attorney General of Canada

Mr. Speaker, I am pleased to have the opportunity to speak to Bill S-201, an act to prohibit and prevent genetic discrimination. I would like to thank Senator Cowan for bringing this bill forward and the Senate for giving such thoughtful consideration to this matter both at committee and in its chamber.

Genetic discrimination is an important issue, particularly as more genetic tests become available to Canadians. Senator Cowan has been a champion against genetic discrimination for several years, working with stakeholders in the medical community and driving the public debate on the risks of genetic discrimination in areas like insurance access and workplace practices.

For his work, I know he has received an advocacy award from The American Society of Human Genetics. I also want to thank the hon. member for Don Valley West for sponsoring Bill S-201 here in the House and for his work in bringing this important issue to the attention of both the public and the House.

I also wish to recognize the work of the committee in the other place on Bill S-201. The committee's work exemplifies constructive debate and collaboration by members of different political parties. There is clearly support from across the political spectrum for the objectives of this bill.

As a government, we are committed to ensuring that Canadians have access to the best possible health care, including both preventive and medical treatments. The health of Canadians is of utmost priority for our government. We understand that genetic testing promises great benefits in the fields of health care and medical research.

Genomic-based research has already changed the way health care providers practise medicine. Genetic testing is one of the tools that is revolutionizing the way a diagnosis is made and has helped detect and, in some cases, treat many conditions. In recent years, improvements in technology have dramatically reduced the costs and time required for genetic testing. At the same time, therapies are becoming better tailored to the genetic characteristics of individual patients.

For these reasons, genetic testing is becoming a normal part of medical practice. Some medical experts believe that whole genome sequencing, in which a person's entire genetic makeup is mapped out, perhaps in childhood, will become the new diagnostic norm before long. However, there is increasing evidence that some Canadians are reluctant to undergo genetic testing that doctors believe will help with their health care. They have concerns about how the results of the testing could be used to their disadvantage in the future, most notably in the insurance and employment contexts.

The committee in the other place heard from numerous witnesses who spoke of persons who had been treated in an adverse way because of genetic information revealed about them through genetic testing. The government takes seriously the importance of access to genetic testing in Canada and the need to prevent inappropriate disclosure of genetic test results. The cabinet, therefore, supports the overall objectives of Bill S-201 and, in particular, the bill's proposed amendments to the Canadian Human Rights Act, the CHRA.

These amendments would add genetic characteristics to the list of prohibited grounds of discrimination under the CHRA. They would also specify that, where the ground of discrimination is a refusal to undergo a genetic test or to disclose or authorize the disclosure of the results of a genetic test, the discrimination shall be deemed to be on the ground of genetic characteristics. By adding genetic characteristics as a prohibited ground of discrimination, the CHRA can help to address concerns about the misuse of genetic information in a meaningful way. This is an important step forward.

Anti-discrimination laws, such as the Canadian Human Rights Act, aim to promote equality of opportunity in workplaces and in access to goods and services. They are also aimed at preventing arbitrary disadvantage based on personal characteristics that individuals cannot change about themselves. The CHRA currently prohibits discrimination on 11 grounds, including race, age, sex, and disability.

For those who are concerned about potential discrimination by federal employers based on the results of genetic testing, it is important to note that the CHRA already offers some protection against discrimination based on genetic characteristics. For example, discrimination based on perceived disability due to predisposition to a disease revealed through genetic testing falls within the scope of the existing ground of discrimination based on disability.

Bill S-201 would make existing protections more explicit, as well as expand protection beyond genetic characteristics that would be elated to other prohibited grounds of discrimination, such as disability. This would allow people who were subject to discrimination on the basis of genetic characteristics to make their case in precisely those terms.

Making a formal claim of discrimination can be an intimidating process and one that is often pursued without legal representation. For those who believe they have been discriminated against on the basis of their genetic characteristics, it would now be easier to bring such a claim, since they would no longer have to interpret the law of disability related discrimination or otherwise try to link their claim to another ground in order to establish discriminatory treatment.

Explicit protection for discrimination based on genetic characteristics would also raise awareness of the Canadian Human Rights Act protections and remind federally regulated employers and providers of goods and services of their human rights obligations.

For these reasons, the government supports the CHRA amendments proposed in Bill S-201. The proposed amendment represents an important step forward in creating the framework to address these potential disadvantages toward preventing genetic discrimination in Canada. I look forward to further discussion about the scope and impact of these changes to the CHRA as the bill is considered by a parliamentary committee.

However, it must be recognized that Parliament is limited in its ability to unilaterally address the concerns of stakeholders because there is no federal jurisdiction over private contracts of insurance, nor over employment or services in provincially regulated industries. For this reason, the government will also engage with the provinces and territories with a view to developing effective strategies regarding genetic testing and appropriate protection of the results of this testing.

The minister has informed me that officials in the Department of Justice are already working with officials from other government departments to determine how best to pursue discussions with the provinces and territories about the many different issues arising from the potential uses of genetic information. I know the government would welcome advice and input from Senator Cowan and the hon. member for Don Valley West.

The government looks forward to engaging in discussions that will complement Bill S-201 and can lead to practical and substantive protections for all Canadians.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 6:15 p.m.
See context

Conservative

Garnett Genuis Conservative Sherwood Park—Fort Saskatchewan, AB

Mr. Speaker, this is my second speech of the day and the second time today I am agreeing with a bill coming from the government side, so lightning does strike twice. In fact, I am even agreeing with my friend from Don Valley West. I think it is fair to say that we have not always agreed on things that have been discussed in this place, but I very much appreciate the energy and the hard work he brings to this and other causes we have discussed over the last year.

I will be supporting, and I believe most, if not all, of my colleagues will be supporting, this piece of legislation, which aims to end genetic discrimination in Canada.

I think it is important to review that this approach has a history of multi-partisan support. Our previous Conservative government proposed Bill C-68. There have been various bills from I think all three of the major parties at different times. I think ours was the first government bill proposed on this issue, and it did not make it through in time to pass.

It is good to see that there is a consensus on this issue. It is something that is particularly important to all members of this House.

I want to identify some background on genetic discrimination and then go through what I see as three principal arguments in favour of moving forward with this legislation.

As other colleagues have discussed, genetic tests now, as science continues to develop, allow us to know all kinds of information about what diseases we may be exposed to or may be more likely to contract as a result of our genetics. This information is helpful to all of us as we seek to combat or prepare for the possibility of disease.

All of us have an interest in ensuring that this area of science is developed and that people access information that allows them to live healthier and more informed lives. Yet it is currently possible for an employer to discriminate against someone on the basis of a genetic test. It is possible for an insurance company to deny an insurance claim on the basis of a genetic test someone had. This is what has come to be called genetic discrimination; it is when someone is treated differently on the basis of information that is revealed by a genetic test. The bill aims to combat that.

As other colleagues have mentioned, I think there will be a requirement for complementary provincial legislation as well. I am open to hearing amendments. Generally speaking, I like the bill the way it is, but yes, there is a need for complementary provincial legislation, and hopefully we will see federal engagement, working with the provinces, to encourage the development of that complementary legislation.

I would like to identify what I see as three principal arguments in favour of the bill. First, genetic discrimination is discrimination. It is very clearly a kind of discrimination. I think all of us in this place accept that discriminating against someone on the basis of any identifiable characteristic does not have a place in Canada.

Our genetics are very much beyond our control, in the same way that any number of other characteristics are, so if we accept the basic principle of non-discrimination, then of course, that applies. There are some exceptions, of course, in our established human rights jurisprudence, things like a bona fide occupational qualification. We allow exceptions, in terms of our human rights law on discrimination, in those cases.

It is very important to note the way genetic testing works. Genetic testing identifies the possibility that people could develop an illness in the future. It demonstrates that they might be at a higher risk for something in the future. However, it is not a present limitation on their qualifications. The fact that people might develop a certain disease in the future that would prevent them from doing their jobs would not in any sense qualify as a legitimate basis for discrimination in the present time, before they have developed the ailment, an ailment that they may in fact never develop in the future. This is discrimination without justification, without the justification we see typically identified in our human rights jurisprudence.

The other thing to acknowledge about this kind of discrimination is that it is discrimination that is often associated with other discriminations. There are certain identifiable groups that, because of their genetic structure, are more likely to face certain kinds of genetic challenges. These groups in particular have been vocal in identifying the specific problem of genetic discrimination as it particularly adversely affects their own community.

We welcome the input of those groups that have been supporting this on the basis of particular cultural communities, as well as the many groups representing awareness about different diseases that have come forward and talked about this as well. Genetic discrimination is discrimination, and on that basis it is unacceptable.

Second, I want to highlight that Canada really has been an outlier when it comes to genetic discrimination. In fact, we are the only country in the G7 that does not, in some way, have legislation that is confronting this challenge. We need to be conscious of that. It does not necessarily mean that we have to do what the rest of the world is doing, but we should, at the same time, sit up and take notice when Canada is out of step in this way. Other countries have seen the value of protecting people's ability to access genetic information without worrying that it could somehow lead to discrimination against them, that it could somehow limit their opportunities going forward.

I think it is important that Canada gets in line with what the rest of the world is doing and that we get in line with what is happening in other parts of the G7 in order to protect these fundamental rights.

The third point I want to make is the issue of perverse incentives. I want to talk about this in two parts. Ideally we would have as much research happening as possible. We would not allow the emergence of any kind of disincentive for research or participation in research. Also, we would not want any kind of disincentive for people to get medical information about themselves that would be useful for them in the future.

What we see with the current reality is that it actually creates perverse incentives in both of these areas. First of all, there may be cases where people are reluctant to participate in research, because in the process of that research they will gain information about themselves, or there will be advances in genetic research which could lead to further discrimination against people like them, people who share their kind of genetic makeup.

We could imagine cases in which a person chooses not to participate in genetic research because they are afraid that further identification of genes that cause a particular disease would be subsequently used for discrimination. We obviously do not want to see that. We want to see as much research as possible that will encourage information, as well as well-being.

Introducing the legislation, this prohibition on genetic discrimination, takes a positive step in terms of removing that disincentive. Now there is no longer the disincentive for people to be involved in research.

The other part of this perverse incentives issue is right now the current reality is one in which people have a disincentive to get genetic information about themselves. If they have this genetic information, there is a real risk that insurers will ask for it and use that information against them. That creates a issue, then, for people who want to know what their genetic situation is and if they are more at risk for something, but then choose not to because of their fear of discrimination.

I want to just make this concrete in the remaining time I have. We know of BRCA1 and BRCA2, which are genetic markers for breast and ovarian cancer. Ashkenazi Jewish women are 10 times more likely to carry these cancer-causing variants than the general population.

We know then that there is this greater risk with this community. If a person knows that they are at a greater risk for contracting a certain kind of cancer, they might consider it worthwhile to get information about whether they have those genetic markers. Then it will perhaps affect the frequency of the tests they receive and the way in which they monitor certain potential markers for that disease. Yet someone might choose not to get this test, which would put them at greater risk, simply because of the fear of discrimination.

Genetic discrimination is a form of discrimination. Up to this point Canada has been an outlier in this respect. We need to confront these issues of perverse incentives. We need to encourage research. We need to encourage people to get tested and get information about themselves.

For these reasons, I will be supporting this excellent legislation and I hope my colleagues will as well.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 6:25 p.m.
See context

NDP

Sheila Malcolmson NDP Nanaimo—Ladysmith, BC

I will follow your lead, Mr. Speaker. I thank the member opposite and the senator for initiating this important legislation.

The New Democrats believe that the government must work to end genetic discrimination and encourage genetic testing to improve health care planning and care provided to Canadians. New Democrat MPs Bill Siksay and Libby Davies were leaders on this front. They brought bills to the House in 2010 and 2012 to end such discrimination, and so I support this bill also.

Although B.C.'s Minister of Health has said genetic discrimination is “one of the most critical patient privacy issues of the modern era”, to our shame, we have no provincial or federal legislation protecting privacy for genetic test results.

Therefore, what is at stake with the status quo? Norm from Nanaimo summed it up in a letter to me:

“Under current law, companies can obtain private genetic information by request and then discriminate against people based on their genes. Not only is this practice unfair to Canadians, it is also putting many people at risk. Genetic testing saves lives, but all too many who could benefit are opting to refrain from testing, fearing future discrimination. This fact alone infuriates me, saddens me, and has moved me to write to you today.”

I agree. No Canadian should forgo critical testing because of the fear of discrimination by their employers or insurers.

As the New Democrat spokesperson for status of women, I have a particular understanding of this legislation's need, particularly how critical it is for Canadian women.

September is Ovarian Cancer Awareness Month. A week ago, Nanaimo's Ovarian Cancer Walk of Hope raised over $5,000. This is a cause that really needs that kind of community help.

As I said in the previous session at the Standing Committee on the Status of Women, for ovarian cancer, the fatality rate is terrible. It is the most fatal women's cancer in Canada. More than half of the women who are diagnosed will die of the disease within five years. There is no vaccine. There is no screening. There have been no major treatment breakthroughs since the early nineties and no improvement in outcomes.

There is hope in genetic testing. Fifteen to twenty per cent of all ovarian cancer cases are related to a gene mutation which is hereditary. If this is known, actions can be taken. The problem is women at risk for the gene mutation for ovarian cancer may decline to have genetic testing because they fear discrimination from their employers or insurers. We hearing directly from Ovarian Cancer Cancer that we have real cases of this right now.

If this Parliament prohibits genetic discrimination, Canadians will have greater freedom to seek the best health care possible without fear of discrimination. The New Democrats are proud to stand with nurses, doctors, health care providers, and the vast majority of Canadians in opposition to discrimination on the basis of genetic characteristics.

I will carry this on when we next have the pleasure of debating this constructive legislation.

Genetic Non-Discrimination ActRoutine Proceedings

May 3rd, 2016 / 10:05 a.m.
See context

Liberal

Rob Oliphant Liberal Don Valley West, ON

moved that Bill S-201, An Act to prohibit and prevent genetic discrimination, be read the first time.

Mr. Speaker, it is a great honour to give first reading to Bill S-201, an act to prohibit and prevent genetic discrimination. I want to thank my hon. colleague, the member for Madawaska—Restigouche, for seconding this.

The bill would create a new genetic non-discrimination act that would prohibit all service providers from demanding genetic testing or requiring that a person disclose the results of past genetic testing. It also provides for a complaint procedure for federal employees facing disciplinary actions because of genetic testing, and adds genetic characteristics as a prohibited ground of discrimination under the Canadian Human Rights Act. The protections in the bill would enable Canadians to access medical advances in genetic testing without the fear of negative consequences or repercussions on them and their families. It would empower Canadians to have better health.

(Motion agreed to and bill read the first time)