Genetic Non-Discrimination Act

An Act to prohibit and prevent genetic discrimination

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

Status

This bill has received Royal Assent and is, or will soon become, law.

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

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