Bill S-201 (Historical)

Genetic Non-Discrimination Act

An Act to prohibit and prevent genetic discrimination

This enactment prohibits any person from requiring an individual to undergo a genetic test or disclose the results of a genetic test as a condition of providing goods or services to, entering into or continuing a contract with, or offering specific conditions in a contract with the individual. Exceptions are provided for medical practitioners and researchers, as well as for insurance providers in respect of high-value insurance contracts if provincial laws expressly permit a requirement that existing genetic test results be disclosed.
The enactment amends the Canada Labour Code to protect employees from being required to undergo or to disclose the results of a genetic test, and provides employees with other protections related to genetic testing and test results. It also amends the Canadian Human Rights Act to prohibit discrimination on the ground of genetic characteristics.

The House resumed from September 20 consideration of the motion that Bill S-201, an act to prohibit and prevent genetic discrimination, be read the second time and referred to a committee.

Genetic Non-Discrimination Act

[Sean Casey, Liberal, Parliamentary 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.

[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.

[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.

[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?

[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.

[Thomas Keenan, Professor, University of Calgary, As an Individual]

Thank you very much, Mr. Chair, for the invitation to participate in your meeting. I'm going to share some thoughts about technologies that are just around the corner and that I believe will have a profound impact on how we think about privacy. My goal is to help us understand them so that, as much as possible, our laws can be ready for what's coming next.

I am a professor in the Faculty of Environmental Design at the University of Calgary, as well as an adjunct professor of computer science. I'm a research fellow of our Centre for Military, Security and Strategic Studies and of the Canadian Global Affairs Institute here in Ottawa. I've spoken to all the major hacker conferences like DEF CON, Black Hat, and one with the intriguing name of Hackers on Planet Earth, so I try to keep track of what both the good and the bad hackers are up to.

I'm also pretty sure that I taught Canada's first course in information security in 1974. Back then it was simple: lock your computer room doors, choose good passwords, and don't put confidential stuff in the trash. Today, it's much more complicated.

Consider a 2015 project called “The Face of Litter”, sponsored by Hong Kong Cleanup. Workers collected discarded chewing gum and cigarette butts on that city's streets and sent them to Parabon NanoLabs, a privately held Delaware corporation. Parabon used DNA phenotyping to create an approximate digital portrait from each sample. A week later, on passing the scene of the crime, the spitter saw an eerily familiar face on a video screen, a DNA-driven self-portrait.

Now, how could they do this? There was plenty of saliva left on those discarded items to do DNA analysis. In fact, it requires only one nanogram. Certain traits like eye colour, hair colour, and facial shape are easy to work out. Ancestry can be analyzed. Stir in machine intelligence and real-world knowledge—gum chewers are more likely to be 18 to 34, and cigarette smokers older—and you get a very creepy scenario whereby biodata is used not to identify someone specifically, but to infer things about the person. This challenges our long-held definitions of personally identifiable information and personal health information.

In my 2014 book, Technocreep: The Surrender of Privacy and the Capitalization of Intimacy, I suggest that a store might grab a few skin cells when you type in your PIN and send them off for analysis. The next time you visit that store, you might see a pop-up asking if you knew you were pre-diabetic and saying, “Here's a special coupon just for you.” While to my knowledge no store is doing this yet, we have seen retail outlets in the U.S. and the U.K. use facial recognition to identify shoplifters, VIP customers, and known litigious individuals. Banks such as HSBC are already using facial recognition for client identification, and several Canadian banks are doing biometric trials.

Your biometric data, be it your voice, face, or DNA, might well be covered by the Privacy Act and under PIPEDA's definition of personal health information, though those definitions will need to be updated as technologies emerge, but does this legal protection do the average person any good? In practice, many customers would not notice an obscure clause authorizing the use of their biometric data in the retail or banking environment. It could be buried in the terms and conditions document, which hardly anyone reads. Some people might even give consent to the use of their biometrics, hoping to save money, get better service, or obtain useful health information.

I believe that citizens may not fully understand all the implications of collecting, storing, and exchanging their biometric data, as well as secondary uses and cross-correlation of biometric and other databases. We need laws that mandate full disclosure and a process to ensure real compliance, which would mean more than just guidelines on the OPC website. Even today, public overt surveillance cameras are supposed to carry proper signage. In my experience, most carry no signage, and nobody does anything about it.

Then there's the time problem. Fifty years ago, a criminal may have left blood at a crime scene with impunity since, aside from determining blood type, it didn't hold much information. Today, law enforcement is solving long-dormant cold cases through DNA analysis of old samples.

We cannot predict what future data analysts will extract from our biological and biometric data, except to say it will be more than they do today. Experts also suggest that quantum computers will be able to retroactively decrypt decades of data that we currently believe is secure. There's a wonderful phrase that describes all this: beware of time-travelling robots from the future.

I do detect a growing unease in the Canadian public. When I talk to people about biometric identifiers, from ear shape to heart rhythms to your unique body odour, which can identify you, their ears perk up. Recently I was approached by Costco's magazine for an article on the downsides of biometric identification. I explained how fingerprints can be stolen and put on a fake finger with a 3-D printer. A hacker named Starbug even captured the fingerprints of the German defence minister from a high-resolution photo of her hand.

Even more troubling is the belief that biometrics are infallible, which they are not. They have error rates that vary depending on parameters set by the designers. The first-generation NEXUS terminals used at Canadian borders would sometimes fail to uniquely match a person from the eye biometrics they obtained.

Illinois and Texas have passed specific commercial biometric privacy laws, and article 9(1) of the European Union's forthcoming general data protection regulation puts specific restrictions on use of genetic data and biometric data where processed to uniquely identify a person. Canadians need a similar level of protection, and these laws provide a starting point for us.

Another area that needs serious thought is behavioural biometrics. In Technocreep I review Progressive Insurance's Snapshot device, which people install voluntarily to try for a discount on their car insurance. It records how much they drive, when they drive, and how hard they hit the brake. I suggested that it might be a sensible choice for some people, especially since it didn't track where they drove. Then Desjardins insurance brought out the Ajusto app, which uses your smartphone to create a driving-quality score. Unlike Snapshot, this system knows exactly where you are, and even how well you respect the speed limit.

Right now, systems of this nature are opt-in, and the companies take pains to tell consumers that even bad driving will not raise their rates. However, there is certainly the possibility of driving monitors and even wearable fitness monitors becoming de facto mandatory in order to obtain insurance at a reasonable rate. Insurance is, after all, about spreading risk and charging risk-based premiums.

In opposing the long-overdue genetic privacy law for Canada, Bill S-201, Jacques Y. Boudreau, chair of the committee on genetic testing for the Canadian Institute of Actuaries argued that an essential element for insurance to work properly is an equal access to information by both parties. There is clearly tension brewing between our right to keep information private and commercial interests.

We spend a lot of time worrying about how an authorized data collector uses our data. However, a flood of data breach examples, from the Sony hack, to the DNC emails, to the Ashley Madison fiasco proves that our personal data can fall into the wrong hands with devastating consequences. People whose email addresses appeared on the Ashley Madison client list have received blackmail threats, suffered workplace repercussions, and in three reported cases have committed suicide. A further complication here is that people could appear on that list without having actually signed up due to the lax design of the system.

While there are hacking-related Criminal Code provisions such as mischief in relation to data and unauthorized use of computer, these do not directly address the privacy implications of hacking. Of course, many perpetrators are never caught, but some are. There should also be consequences for the entity that manages the data if they did not take reasonable precautions to secure it.

Therefore, I support effective data breach notification in both the public and private sectors, as well as enhanced mechanisms, including order-making powers, to enable the Privacy Commissioner to preserve public confidence. I also support regular review of our privacy laws at least every five years.

I will close by revealing that you've been listening to a cyborg, a human being with a new technological body modification. I had an RFID chip implanted in my hand at this year's DEF CON conference. Right now it gives me only one superpower: I can open my door at the university without fumbling for my ID card. In the near future, devices will be available to give people telephoto vision, super-acute hearing, and enhanced mental powers.

Canada's first privacy laws date from the era when information was kept on paper, and we dragged them into a world where our data lives in cloud networks somewhere on the planet. Our next challenge, one that will keep us busy for a long time, is dealing with the implications of the data being us, an intimate part of our humanity.

Thanks so much for your attention. I look forward to your questions.

[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)

Message from the Senate

[The Deputy Speaker, Conservative, Bruce Stanton]

I have the honour to inform the House that a message has been received from the Senate informing this House that the Senate has passed the following bill to which the concurrence of the House is desired: Bill S-201, An Act to prohibit and prevent genetic discrimination.