Ladies and gentlemen, we're all here.
The meeting is called to order.
It's a great pleasure to welcome all of you to this meeting of the Standing Committee on Justice and Human Rights, where we will be commencing our study on Bill .
It is a great pleasure to welcome the Senate sponsor of the bill, Senator James Cowan.
Welcome, Senator Cowan.
The House sponsor of the bill is Robert Oliphant.
Welcome, Mr. Oliphant.
We've also had the kind agreement of all the members of the panel to appear together to allow the committee to pose more questions to all of them.
I'd also like to welcome, from the Canadian Human Rights Commission, Marie-Claude Landry, the chief commissioner.
Welcome, Ms. Landry. It is a great pleasure to welcome you here today.
Welcome also to Fiona Keith, counsel, human rights protection branch, and Marcella Daye, senior policy adviser, human rights promotion branch.
Thank you so much to all of you for appearing.
I'm going to turn the floor over to Mr. Oliphant and Senator Cowan, whoever wishes to go first.
Thank you, Mr. Chair. I will begin the presentation.
Thank you, Mr. Chair and all the members of the committee, for this opportunity to appear before you along with my friend and colleague Senator Cowan, the sponsor of the bill in the Senate.
It's funny to be sitting at this end of the table. It's a great privilege, and I'm reminded, as the chair of another committee, of what a great opportunity it is to be a witness before a parliamentary committee, so thank you.
I was very pleased and a little surprised when the House of Commons voted unanimously in favour of Bill and to send it here for further study. I did expect it to pass, but I was particularly pleased to have support from all sides and all corners of the House, including members of every party and the independents, including the Bloc Québécois and the Green Party.
The fact that it passed unanimously in the House and Senate tells me that the groups, the individuals, the patients, and the geneticists, the people in Canadian society who have been arguing for this bill and for genetic protection, have made their case and have made it well, and senators and members of Parliament have had an education in that process, so I'm not going to dwell particularly today on all the policy issues, though we can get into some of that.
I particularly chose that this bill would come to this committee for a reason. I sensed that the health committee would understand very intuitively the importance of the bill and the way medicine is changing in the 21st century, and they would get that very quickly; however, this is a bill that does pass a law. It not only amends two laws but it creates a new act, and I think this is an appropriate committee to actually get into the nature of discrimination and into the nature of the way we develop laws in this House and in this country.
I want to take a moment to thank in particular Bev Heim-Myers from the Canadian Coalition for Genetic Fairness, who has the presidency of the Huntington Society of Canada, and her team, which has brought together a wide collection of health charities and patient groups, as well as others in civil society—the CIJA, for instance—and other groups that have come together to educate Canadians and to make sure this bill is passed.
This bill is about changing the way medicine is done in Canada. Twentieth-century medicine was a view that we had on the way we were doing both diagnostic and corrective medicine. In the 21st century, with the discovery of the human genome, we have a radically new way of having medicine that is very much targeted.
For example, this past summer, the gene for metastatic fast-moving prostate cancer in men was discovered in about 80% of the cases. My father died of prostate cancer after a 20-year journey. His friend and colleague died after 18 months. For a long time, researchers have been looking at different cancers and understanding it in that way. This summer, there was a radical shift in looking at cancer and understanding that the genetic makeup of one person is different from another person; it's not necessarily the cancers that were different. This hasn't explained it completely, and there's not 100% certainty about it, but it's an inkling for further research and for changing the way that each of us will have our own health taken care of, as well as what we can do for our constituents.
I don't, however, want to overestimate the genetic factors in disease. That would, I think, also be damaging to our shared understanding of the new world of 21st century medicine. There is mounting evidence that within biology and biochemical sciences, genetics is only predictive in about 5% of chronic illnesses or disease. In fact, 90% to 95% of illnesses are shaped by our environment and by our lifestyle and other things. For us to be moving the needle too far on this is also of concern, in that we don't want to say that because someone has a genetic makeup, they are certain of getting a disease. That's just not the case. It is a marker. It is a helper for a geneticist, a physician, or a clinician, but it is not the end of the story for anyone who has that marker. Some research by opponents of this bill, I think, have not understood that and not taken that into account in their tables.
Bill has three components, each of them essential to fight discrimination, similar to the legs of a stool that has just three legs. By order of importance, they are: the Genetic Non-Discrimination Act, which would prohibit all forms of genetic discrimination, whether based on DNA or RNA; amendments to the Canada Labour Code; and amendments to the Canadian Human Rights Act. Each component is essential. None of the three components can be removed from the bill, just as we cannot take away one or two legs of a stool and still be able to sit on it.
The first leg of that stool is the creation of a new statute, the . This act would make it a criminal offence for a service provider or anyone entering into a contract with a person to require or compel a person to take a genetic test or to disclose the results of a genetic test.
It would also make it a criminal offence for a service provider or anyone entering into a contract with a person to collect, use, or disclose a person's genetic test results without prior consent. There would be exceptions, of course, for health care practitioners and research.
The bill sets out criminal penalties that are, I would note, strong, but they are maximum, not minimum, sentences. This is a guideline. It stresses the importance of this as a human right.
The bill states in black and white that society condemns genetic discrimination. It is not acceptable and will not be tolerated. The criminal sanctions in the bill are high in order to serve as an effective deterrent. The bill does not target any particular sector or industry. It focuses on reprehensible behaviour, which is specifically defines, and legally protects the public against it.
This new act would apply to everyone who commits a prohibited act.
The second part, the second leg of the stool, consists of changes to the Canada Labour Code. It sets up a complaint procedure for those employees who work in federally regulated industries. It's part of the change about government being a good employer.
The third, which I think is important but not as important as the first, is an amendment to the Canadian Human Rights Act, namely, the insertion of the words “genetic characteristics” into that act. Some have asked whether that alone would be sufficient, and I will argue that it would not be sufficient. I have been a member of a human rights commission. I have been a chair of a human rights commission. The onus in a human rights complaint is put on the complainant. It's on the patient, who may actually be struggling and may not have the financial resources. The act would ensure that the crown was acting on behalf of the population to ensure that we have strong deterrents to this form of discrimination, and it would make it fundamentally important for all Canadians to understand it.
You'll be hearing from groups in the insurance industry who are concerned about this. We will draw attention to the Privacy Commissioner's report that the insurance industry does not need to worry in the short or medium term. We understand that. I think we would be open to amendments at the committee if you wanted to put in some kind of a review over three years or five years, whatever is legislatively appropriate, to ensure that this won't in fact change the nature of the insurance industry.
We're of the strong belief that having the best human health information will safeguard Canadians' health, will encourage them in their lifestyle issues, in their environmental factors, and in co-determinants, to have the best health outcomes possible. In fact, we think this will help the insurance industry. People like you and me will pay our premiums for a longer period of time, and will ensure that we have the best health outcomes, and the insurance industry, like the other countries in the world that have this kind of protection, will not face an adverse reaction.
I look forward to your questions. I want to thank you for considering the bill, and also, in particular, end by thanking Senator Cowan, who is getting long in the tooth but is still eager, engaged, and really quite wonderful at this. When he started this process, there were just over 2,000 genetic tests, and in just a few years, there are now close to 38,000 genetic tests. He has shepherded this bill, brought it to different iterations, and has taken it through the Senate to get unanimous consent. He has offered it to me—I'm the custodial parent of this bill, and it's a great privilege to work with him in our adoptive procedure.
Thank you, Senator Cowan.
Thank you very much, Chair, and thank you, members of the committee, for allowing me to appear. I thank my friend, Rob, for most of what he said. The crack about being long in the tooth, I'd ask him to reconsider, but the rest of it, I appreciate.
I've circulated a statement that you can have a look at, at your leisure, so I won't cover all of it in the few minutes that are available today, but I would be happy to return to it in the question period. I want to get, really, to the essence of it. There are some concerns that have been expressed about the bill and I want to address those.
We know that this bill is strongly opposed by the insurance industry. They now have access to genetic test information and they, understandably, don't want to relinquish that access. They say terrible things will happen to the industry if this bill passes. I understand their concerns, but there are many countries around the world, as you know, which have prohibitions in place like those contained in Bill , and the insurance industry in those countries continues and does just fine.
I hope you'll hear from the Privacy Commissioner of Canada. His office commissioned two studies, which concluded—and Rob alluded to this—“At the present time, and in the near future, the impact of a ban on the use of genetic information by the life and health insurance industry would not have a significant impact on insurers and the efficient operation of insurance markets.” Earlier this year, when the Privacy Commissioner appeared before the Senate in its study of this bill, he confirmed that his office stands by that conclusion.
While I understand the concerns of the insurance industry, I don't share them. When I balance the concerns of the insurance industry against the potential health benefits for Canadians of genetic testing without fear of discrimination, my choice is clear.
When Senator Ted Kennedy sponsored GINA, which is the American federal law against genetic discrimination, he hailed it as the first major new civil rights law of the new century. He said the bill recognizes that “discrimination based on a person's genetic identity is just as unacceptable as discrimination on the basis of race and religion.” I agree.
Bill says that it's not acceptable to put someone in a position where they must hand over their most personal information, information about their DNA. We have criminal penalties if someone steals a car, a computer, or a piece of jewellery. Six years ago, Parliament passed an anti-spam law, which imposed penalties of up to $10 million for sending unwanted email. If we're prepared to legislate to prohibit sending unwanted emails, then I believe we should be prepared to prohibit unwanted access to one's genes.
I understand from the speeches at second reading and from my conversations with others that the government supports amendments to the Human Rights Act but opposes everything else in my bill; that, in fact, there is an intention to propose amendments to delete all of the provisions relating to the Canada Labour Code and to the genetic non-discrimination act.
I am told that the concern is constitutional, that some lawyers believe that the provisions in the genetic non-discrimination act would fall within provincial, not federal, legislative authority. This issue was explored in detail when the bill was before the Senate. I know that you are planning to hear from a number of distinguished scholars, including Peter Hogg and Professor Bruce Ryder, who are pre-eminent constitutional authorities—and I am not one of those. Just let me say that I take issues of constitutionality very seriously. I'm satisfied, based upon discussions I've had with eminent constitutional authorities in this country, as well as our own Senate Law Clerk and Parliamentary Counsel, that Bill , including the proposed genetic non-discrimination act, is constitutional as a valid exercise of the federal criminal law power and it, therefore, falls well within the legislative authority of our Parliament.
There's been a suggestion, as well, that before we proceed, the provinces and territories need to be consulted. In fact, all the provinces and territories have been consulted about this bill, not once, but twice. Last December and January, I wrote to all the ministers of health in the provinces and territories and then, in February, the Senate Human Rights Committee, which was the committee studying this bill, wrote to all the provincial and territorial ministers of justice.
In total, we received replies from nine provinces and territories. Not one raised any objection or problem with the bill, either from a policy aspect or from a constitutional or jurisdictional point of view. Indeed, several provinces expressed strong support for the bill. I have now met or spoken with cabinet ministers in three provinces. Not one has raised any constitutional or jurisdictional concerns or any policy concerns. My strong impression is that this is an area where the provinces recognize the need for a uniform, national regime in the form of national legislation.
There was a meeting, just last month, of federal, provincial, and territorial justice ministers in my home province of Nova Scotia. I spoke with the justice minister from Nova Scotia, who happened to be the chair of that meeting. She said that no one raised this bill—not the federal Minister of Justice, nor any provincial or territorial minister of justice. We've seen other situations, where provinces have come forward to express constitutional and policy concerns about federal legislation, including private members' bills. We know about Bill , which would be repealed by Bill , which is now before the Senate. Seven provinces, in that case, sent submissions to the Senate saying that the bill was unconstitutional. Provincial governments, I suggest to you, are not shy about expressing themselves about these matters, but I've heard nothing from any province or territory opposing Bill . As far as I know, no one else has either.
That's not surprising. Canadians need a national solution. They need to know that if they have a genetic test at one point in their lives, they need not worry that at some later time they might move to another part of the country where the rules could be different. They need to know that they will be protected from coast to coast to coast, no matter where they live.
I also want to address the proposal that the bill be amended to delete everything but the changes to the Canadian Human Rights Act. As Rob said, the Human Rights Act is important, but it is a law of limited application, applying only to certain sectors. For example, it has no application to the insurance industry, because the insurance industry is regulated at a provincial level. This came up, as you might expect, during the Senate hearings on Bill . Let me read to you from the hearing, when the then-acting Canadian Human Rights commissioner testified in response to a question from my colleague Senator Eggleton.
Senator Eggleton said:
||[W]hat would you do if somebody came to you with a complaint of discrimination on the basis of insurance that was denied them, under the current law?
The acting commissioner said:
||Under the current law we do not have jurisdiction over the insurance industry. It's federally regulated private sector companies, so as I say transportation, telecommunications, banking industry, but not insurance companies.
In other words, you would be protected as long as you experienced genetic discrimination from your bank or your airline, but that's all. The bottom line is that, if the bill only amends the Canadian Human Rights Act, none of us could responsibly tell Canadians they can feel free to have genetic testing without fear of genetic discrimination, because that would not be the case. We would not have prohibited and prevented genetic discrimination, as the title of the bill says. We would have said, genetic discrimination is unacceptable in certain situations, but perfectly acceptable in others.
No one knows where the future lies, and again, Rob refers to this. No one knows what they will be doing in a few years or even months. This kind of limited protection would not be real protection. Indeed, I would argue, and this has been said to me by representatives of health organizations, that passing such a bill would be dangerous, in that Canadians would think they are protected—after all, Parliament has passed a law against genetic discrimination—but if they did go out and have a genetic test, they, in fact, could well encounter genetic discrimination, and there would be nothing anyone could do about it.
Mr. Oliphant has eloquently described this bill as a three-legged stool. I agree with that analogy. I have every confidence that all three legs of that stool will remain standing, that the whole bill will be found to be a valid exercise of the federal criminal law power. As I've said, all the provinces and territories have known about this bill for some time, and no one, not one person, has raised an objection of any kind.
Will there be a constitutional challenge? Perhaps. We all know that the insurance industry, as I said at the beginning, strongly opposes this bill, and they have deep pockets to launch such a challenge. However, as Professor Ryder told the Senate committee, and probably will tell you as well, “There will always be legal debate—we don't work in the realm of certainty—but I think you can work within the realm of confidence here.”
I'll conclude with a quote from Professor Ryder:
||I am the sort of person who will say that it is one of your most important responsibilities to ensure that the legislation you vote in favour of is constitutional. I want to say, in this case, that I am very confident, and I believe it would be the consensus view of other constitutional experts, as well, that this bill is constitutional. ...I don't think you should be too concerned about the risk of unconstitutionality, because this seems to me to be very solidly within Parliament's jurisdiction.
I'll do my best to answer any questions in the course of the time that we have available.
Thank you very much for your attention.
, Mr. Chair, honourable members.
Thank you for inviting the Canadian Human Rights Commission to speak before your committee on Bill S-201, an act to prohibit and prevent genetic discrimination.
I would like to introduce my colleagues, Fiona Keith, counsel for the commission and Marcella Daye, senior policy adviser. We would like to leave the committee with three main messages today.
First, we support Bill and we strongly support adding the ground of “genetic characteristics” to the Canadian Human Rights Act. Second, while the change to the CHRA would be a positive step, it cannot alone address all concerns surrounding the use of genetic information. Third, if Parliament adopts robust, comprehensive, and forward-thinking legislation to regulate the use of genetic information, it would make Canada a world leader in this emerging human rights issue. Before I elaborate on those three points, I'll speak briefly about the current context of genetic discrimination and human rights law in Canada.
Parliament designed the Canadian Human Rights Act in 1977 to promote equality and to protect Canadians from discrimination based on grounds such as sex, age, disability, and race. Canada's provinces and territories all have similar human rights laws. Through the years, our human rights laws have evolved to keep pace with social change and with technological advances. Genetic research holds great promise and is developing quickly. It has inspired new methods of diagnosis and treatment. Some believe it will revolutionize medicine and health. But as Parliament has been examining Bill , we have learned that some individuals choose to avoid genetic testing out of fear. They fear that the very tests meant to help them may one day be used against them or their children.
People are afraid of discrimination by employers, by schools, or by insurance companies because of what their genes may say about them. In some cases, parents have to decide whether to test their child, knowing that the child's genetic information will follow them into adulthood, and could negatively affect them later in life. A test that could help save someone's life should not be a calculated risk. The scope of information that genetic testing can reveal about us now and in the future is extraordinary, and it goes well beyond our health information.
In the future, these tests could answer even more questions. What is my indigenous lineage? Do I have a genetic propensity to be anxious, a good athlete, or a natural leader? Without regulation the vast information contained in our genes could be used, shared, or accessed without our knowledge. The regulation of genetic information is an emerging area of law that remains virtually uncharted. Other jurisdictions like Ontario are considering legislation. But across Canada, jurisprudence in this area is almost non-existent. Our rights in this area are not clear.
Last February I gave my first parliamentary appearance as chief commissioner of the Canadian Human Rights Commission. I spoke on this very issue and this bill. At that time, I told the Senate committee that the commission supports adding the ground of “genetic characteristics” to the Canadian Human Rights Act. We see this legislative change as an important and positive step towards better protecting people in Canada from genetic discrimination.
As it stands today, the commission has the authority under our act to accept discrimination complaints regarding genetic characteristics only, and only if the complaint is linked to another ground such as disability.
Adding the ground of “genetic characteristics” to our act will allow people to file these complaints without having to link it to another ground. It will make it clear to people in Canada that they have a right to be treated equally regardless of their genetic characteristics and regardless of whether they choose to access genetic testing or share the results.
This brings me to my second point. While changing the Canadian Human Rights Act will be a positive step for human rights, it cannot address all the concerns surrounding genetic discrimination. Other stakeholders and experts from across Canada agree. There will still be a clear need to address the very real and the very serious fears of discrimination raised during the Senate debate on Bill , fears about test results being used against us and fears for our children. We believe that in order to properly address these concerns it is going to take a concerted national approach.
This brings me to my third and final point. In order to prevent harm and keep people in Canada safe, robust, and forward thinking, comprehensive laws are necessary. Doing so will make Canada a world leader in this emerging issue. We encourage the federal government to take the lead, to pass robust national legislation, to meet with provincial and territorial governments to determine how best to implement nationwide protections against genetic discrimination, and to consult with stakeholder groups and human rights commissions across Canada. We believe this concerted national approach is the best way to ensure that Canada's human rights protections against genetic discrimination are robust, forward thinking, and comprehensive.
To conclude, I believe genetic information and genetic tests are meant to help us. But without adequate human rights protections and regulation of this information, genetic information could actually do more harm than good. Taking a test that could help save one's life should not be a calculated risk.
To conclude, taking a test that could help save one's life should not in any way raise another risk. The analysis of genetic information is meant to help us and not hurt us.
I want to thank you very much, and with my colleague I'm available for questions.
I will quickly confess that I am not a constitutional expert. I think that question should be addressed to Mr. Hogg and Professor Ryder when they're here. My understanding from my reading and my consultations with those and other officials and the Senate legal counsel is that—and Mr. Nicholson alluded to this—there is a federal power to legislate against bad behaviour. If Parliament decides that discrimination is something that it wishes to discourage or to prohibit, it can use the federal criminal law power to penalize.
As long as it is not identifying and targeting any particular segment, any particular industry, or any particular actor in society, then that is a legitimate use of the federal power. There are legion examples that can be provided to show where Parliament has done that, has stepped in to deem a particular type of behaviour to be unacceptable, and has used its power under the criminal law to legislate against that.
There is no mention of insurance at all in this bill. There was mention of it. In an earlier version of the bill, I had a provision that was intended to provide protection to the insurers who at that point were concerned that people would take genetic tests and then run out and get millions of dollars' worth of insurance, something that has not happened in any other jurisdiction around the world. For some reason they believed that might happen here in Canada.
We built a protection in to say that if the provinces, which have the responsibility to regulate the insurance industry, wished to provide this protection for high-end policies, they could ask for genetic information. It was intended to be a help to the insurance industry, and they turned it around and said it was all about them. As you'll note, that provision was taken out in the version that I tabled in the Senate after the last election, and it's the one before us now. There's no mention of insurance.
This bill does not target any particular actor, any particular player, or any particular industry. It targets unacceptable behaviour no matter who does it. It just happens that we know from the research and from the anecdotal evidence that we've heard—and that you will hear—that the biggest users and abusers of this information are the insurance companies and, to a less extent, employers. This is not and could not be about any particular sector. If it were, then it would cross that line. In my view and in my opinion, it does not cross the line.
When the people spoke in 2011 and sent me home to Toronto after a brief but very good time in the House of Commons, I was hired to be president and CEO of the Asthma Society of Canada, a small but mighty health charity.
I was fairly quickly elected to the governing council of the Health Charities Coalition of Canada. That is the group that the 30 or so health charities and patient groups in Canada are members of. We look at particular policy issues that are stumbling blocks or barriers for us to advancing the health of Canadians.
At our coalition, we made the decision to get into the area of genetic testing. With the discovery of the human genome, medicine was changing every day. Our old laws and old practices were not keeping up. Everything about our world in health care was changing.
They have not yet discovered the asthma gene; they've discovered biomarkers to recognize why different medications don't work. They used to do it by trial and error. Until a couple of years ago, everything was by trial and error in the area of asthma. We now have biomarkers that tell people why certain medications work.
In other diseases.... This year, for example, they discovered the gene for cystic fibrosis. A few years ago they discovered the genes that are related to breast cancer, ovarian cancer, cervical cancer, now prostrate cancer, multiple sclerosis, Alzheimer's, and rapid onset and early advanced Alzheimer’s. They now have a genetic component for that.
As a patient organization, we found that none of the governments in Canada was moving quickly on this. We looked at the American model; we looked at another model, in Europe, and said, let's do this. That's when Bev Heim-Myers, one of my colleagues, started working with Senator Cowan on this bill.
It seemed a natural fit for me to pick it up. I'm not a lawyer—there's a reason I'm not a lawyer, when I read that list of acts—however, I understood the bill from the health perspective. What I was hoping was that the lawyers would give us a break. That was my goal on this one, to say that the health impact of this is so important and that people's lives could be affected so positively that it's important.
One story I got was that companies were now looking at.... It wasn't so much life insurance that was the problem, but are you going to hire someone who carries a gene when someone else doesn't carry that gene, even though they might have a 5% chance of actually developing this disease because of all the other factors? We now have documented cases of employers choosing one person over another because of the experience of providing health care benefits or drug benefits.
That's not the way we work in Canada. We share risk, we work together on it, and that is pervasive. I would say that is a fundamental principle that we're trying to engage in.
Thank you to all of the witnesses here at committee today. I found your testimony and your comments very interesting and enlightening.
Of course, on the Conservative side, we voted in favour of the legislation not only just to bring it to committee and study it, but in principle we're in favour of it, as well.
As technology advances, and as there's progress made on lots of different fronts, different people want to use the benefit of that technology for different purposes, and I think when that happens, we have to also create the proper safeguards that prevent its abuse. We want to be able to use that technology for good purposes, and I think this piece of legislation seeks to address the potential abuses.
I am a bit intrigued with something Mr. Fraser brought up, which is that the punishment seems to be a little industry specific. You mentioned anti-spam legislation and the monetary penalties there, specifically targeting Internet companies and companies that would use that medium as a source of advertising, and that seems to be drawn there, too.
I'm wondering, from an industry perspective, though, do you see any benefit at all for genetic testing that could be an advantage to people?