Proceedings of the Standing Senate Committee on
Human Rights
Issue no. 2 - Evidence - February 24, 2016
OTTAWA, Wednesday, February 24, 2016
The Standing Senate Committee on Human Rights, to which was referred Bill S-201, An Act to prohibit and prevent genetic discrimination, met this day at 11:32 a.m. to give consideration to the bill.
Senator Jim Munson (Chair) in the chair.
[English]
The Chair: Good morning, senators, and good morning to our witnesses. We are back again with our Human Rights Committee with our study of Bill S-201. Before we start, I would like our senators to introduce themselves. Then we will introduce our witnesses this morning. Our critic.
Senator Frum: Linda Frum, from Ontario.
Senator Ngo: Senator Ngo, from Ontario.
Senator Nancy Ruth: Nancy Ruth, from Ontario.
Senator Cordy: Jane Cordy, from Nova Scotia.
Senator Cowan: Senator Cowan, from Nova Scotia.
The Chair: Senator Hubley has arrived. Senator Munson, from Ontario, but as I have said, my heart is in New Brunswick.
We are here today to study, again, Bill S-201, and we do have a quorum.
[Translation]
Today, we are continuing our study on Bill S-201, An Act to prohibit and prevent genetic discrimination.
[English]
We began our study on this bill last week — this new phase of it — and we continue today.
Our first witnesses this morning are Dr. Ronald Cohn, Co-Director, Centre for Genetic Medicine, Sr Scientist, The Hospital for Sick Children, Department of Pediatrics and Molecular Genetics, University of Toronto; and Stephen W. Scherer, Director, The Centre for Applied Genomics, Hospital for Sick Children and University of Toronto McLaughlin Centre. Also joining us later this morning, I hope, will be Bruce Ryder, Professor, Osgoode Hall Law School.
Dr. Cohn, we will begin with you for a short opening remark, and we will go on from there.
As the new chair of this committee, I like to emphasize that I see this as conversation, not confrontation. We will continue our conversation on this bill.
Dr. Ronald Cohn, Co-Director, Centre for Genetic Medicine, Sr Scientist, The Hospital for Sick Children, Department of Pediatrics and Molecular Genetics, University of Toronto, as an individual: Thank you very much for the introduction and, most importantly, thank you for providing me the opportunity to share with you some of the experiences I have had over the last three and a half years since I moved to Toronto from the United States.
Thank you, Senator Cowan, for moving forward an important bill which has significant impact on how we manage and treat our patients.
I want to give you three examples of experiences I have had over the last year, since I was here already last year and gave a few other examples.
This time, I would like to speak about examples that span the entire field of my medical practice, which extends from research to clinical care. I hope that the examples I give you of specific patients and the issues that come up regarding Canada not having a law in place to protect against genetic discrimination will facilitate our conversation and help me answer some questions that you have.
The first example, which you probably remember if you read my statement from last year, is that we conducted a research study at Sick Kids shortly after my arrival where we looked at scanning and sequencing of the entire genome — whole genome sequencing — and compared it to the clinical test we are doing right now, which is a microarray test. That was a test offered to over 100 patients. You may remember I quoted to you last time that 35 per cent of families which were approached did not participate because of fear of genetic discrimination.
I would like to emphasize one family, in particular, because we have now been able to publish the results of the study. It was a family who have a 14-year-old boy with significant medical complications and who have been looking for a diagnosis for their child literally since day one. This boy was born with multiple medical problems that have continued until the age of 14. This family travelled outside of Canada, to the United States as well as to the United Kingdom, to find answers for their child. When I approached the family and told them, "We are now in a position to offer you, at least on a research basis, a test that has a high likelihood of giving you an answer that you have been looking for,'' I got an emotional reaction from the mother because, she said, "This is the first time anybody has given me hope to even find an answer for one of the questions I have been wondering about for 14 years.''
When we went through the consent process, I had to inform the family, obviously, that there is an issue with genetic discrimination and that there is a risk for the child, as well as for the family and the extended family, because we may find issues that apply to the rest of the family.
After consultation with her husband, she called me crying on the phone and said, "I can't do it. No matter how much I am looking for an answer, I can't do it.''
She then saw our research study published this January, where we were able to demonstrate that the whole genome sequencing, as we expected, is superior to the current clinical testing, revealing significantly more genetic diagnoses. She said she had to be in psychiatric therapy because she was so depressed after she wasn't able to participate in the study. When she saw that the study was actually beneficial, it kind of set her back in her entire treatment.
I know it sounds a bits dramatic, and it doesn't happen to every patient who gets into a depression, but I think there are also not a lot of people who are looking for an answer for so many years and then are so close to potentially finding an answer and then have to make a decision on a rational basis to not move forward with this.
That is an example of my research life.
I think maybe more important are the examples of clinical care that happen in my clinic day-to-day and that really don't have anything to do quite yet with whole genome sequencing and next generation sequencing, which Mr. Scherer will address. This is really the future. Genetic discrimination is not just associated with next generation sequencing; it is associated with every kind of genetic test I am offering right now.
The next example is actually a friend of mine who called me because she knew that I am a geneticist. She had an incidental finding of blood in her stool, had a colonoscopy at the age of 30, and was found to have a significant number of polyps, which were all removed during the colonoscopy.
But her gastroenterologist suggested, "I am concerned, given the fact that you also have an affected family member who had early colon cancer, that you may have a genetic mutation that predisposes you to colon cancer.'' She called me because she is a savvy woman, and she said, "I don't have life insurance. What will I do now?'' I told her, "You either have to get the insurance before we do the testing, or, if you do the testing, then you will have to deal with the higher premiums associated with this.''
Looking at the health environment scan here in Canada, it turns out she actually had to do the genetic testing in order to do obtain the OHIP coverage for her yearly colonoscopy that is necessary for this disorder in order to prevent her from getting colon cancer.
I want to illustrate the conundrum she was in. On the one hand, she wanted to get life insurance, but she couldn't get it if she would get the genetic testing, which turned out to be positive. She decided not to get any insurance and to just get the yearly OHIP-covered colonoscopy, which, in the end, will keep her alive.
It is very important to see that, even with health care coverage, you can find yourself in a situation where you have to choose one or the other instead of benefiting from both.
The last example is probably the most difficult one for me to share with you. It is a family I met shortly after I came to Toronto. Some of you may know that one of my areas of expertise in clinical medicine is looking at children who have low muscle tone and have neurological disabilities. I saw a 10-year-old girl in my clinic who had a history of low muscle tone and significant developmental delay that got worse over years. She was born almost normal and, at the age of five, started to decline slowly.
Her mother, interestingly enough, had very mild symptoms, too. When I saw the child and examined the mother, too, while I didn't know exactly what kind of disease I was looking at, I was worried about a general neurological progressive disorder that was inherited by the mom. I suggested a certain gene panel. A lot of times when we do gene testing now, we do not just go for one gene but a panel of genes. In this case, I was looking at 36 different genes for disorders that I think were somewhat fitting.
Again, as you have to go through the consent process of offering this clinical test, the issue of genetic discrimination came up. The mom said, "How much? What is the likelihood that you think I have the same disorder?'' I said, "At this point, I have to assume that you have a milder version of what your daughter has.'' We had a long discussion, and not just about life insurance, because I think what is really important here is that genetic discrimination and protection against it is not just about life insurance; this is about protection of individuals in society.
While she had an issue with not knowing what to do and not having life insurance or long-term disability insurance, one other aspect she talked about is how she will cope with it at work if she is not really protected. "How will my boss look at me if I have a disease and if he knows the significant disabilities of my daughter — how will that affect me?''
She asked me, "What is the chance that we can do something about it if you find a diagnosis?'' I said back, "I don't know, because I don't know what it is.'' Most of the genetic disorders don't have a treatment.
So she decided not to do it.
Two years later, she came to me, more recently, and she decided let's do it now. So we did the genetic test, and it came back with a very surprising result. It came back with a disease I didn't expect, because it was a very abnormal presentation of the disease. It happened to be that last year a group of physicians in the United States, Canada and the U.K. did a clinical trial for this disease for a new drug that is close now. So the mom asked me if I thought she could have been able to participate in that trial if we had known two years ago. What is the answer? Maybe yes. I don't know whether she would have qualified in terms of the inclusion and exclusion criteria, but she didn't even have a chance to do it.
I was recently asked by a journalist who was interested in this topic how it makes me feel. The best term to describe it is that it is paralyzing. It is paralyzing for me as a clinician that I can't offer the best, optimal care to the patients and families I see in my clinic, because we are dealing with a lack of protection against genetic discrimination.
Thank you.
The Chair: Thank you very much, Dr. Cohn. We will move on now to Mr. Scherer.
I want to remind everyone that we have a good hour of discussion from here on in, so we are given a lot more time.
Stephen W. Scherer, Director, The Centre for Applied Genomics, Hospital for Sick Children and University of Toronto McLaughlin Centre, Hospital for Sick Children and University of Toronto McLaughlin Centre, as an individual: Okay. So you are inviting me to speak for an hour?
The Chair: I have heard you speak before; I've heard you speak for an hour on the missing gene. Yes, you sure can speak.
Mr. Scherer: Thank you very much for inviting me here. This is perhaps one of the most important days or appearances of my professional career, and I acknowledge the time and effort that this scholarly group has put into this discussion.
By way of introduction, I am a PhD-trained molecular geneticist. So I am the guy who studies the DNA, finds these genetic variants and tries to make the association with disease. I have been working on this for 25 years now.
Before I give you a bit more background about how important genetics are, I will make the statement that I personally believe that no individual should be treated differently due to their genetic endowment, because you inherit that from your parents, which is inherited from their parents. In a way, we are all common through our ancestry right back to the original ancestors of the planet Earth.
Genetics and DNA are the most powerful information we have, because it is the only information that provides reflection on our past, our present and our future.
The challenge is that it is not always entirely predictive. It is a risk factor. In some cases, it is entirely predictive, and then there is everything in the gray zone in between.
I thought I would make a few comments on genetic variation. I don't know if you got your "genetics 101'' at the start of this, but it is important to step back and talk a bit about not only how common we are but also how unique we are as individuals, and how this plays into the whole issue of genetic discrimination.
As Dr. Cohn said, we now have the technologies for the very first time to sequence not only the genome of an individual from our population, which was the product of the Human Genome Project, but we can sequence in two days now for roughly US$1,000 the genome of any individual in this room. In my laboratory in Toronto, we will be doing 10,000 individuals in 2016. It is not that the technology is in the future, it is actually here. Most certainly in every teaching hospital in Canada, thousands of genetic tests are being delivered, in part on a research basis and also, in part, in typical clinical services, every single year.
So we have a genetic future, because it will only increase in orders of magnitude, but it is also actually here already.
To come back to the topic of genetic variation, the genome is the complete complement of DNA that you inherit that is packaged into the 23 pairs of chromosomes. Like it or not, you are one half of each of your biological parents; you inherit half from your mother and father. There is this mixing that goes on during their germ cell development, and it is that mixing that contributes to what makes you unique.
Now, in my laboratory, we have some unpublished data that we can actually quantitate the number of new genetic changes that are specific to me versus those inherited from my mother and father. It would be the same data if you looked at your families. Roughly only 100 new genetic changes are found in my genome compared to my mother and father.
When we are talking about genetic disorders, the majority of them are based on inherited genetic variants. There are over 6,000 different genetic disorders — things like cystic fibrosis, muscular dystrophy, which we heard about, and forms of cancer.
My laboratory studies autism spectrum disorder. There are over 100 different forms of autism that have genetic causes, and autism occurs in 1 in 68 newborn children now.
Like it or not, the reality of life is that if you have not been affected by a genetic disorder yourself, you will know someone who has. These laws that need to be studied very carefully will impact every single person in this audience, not only now but also in the future.
It is this issue of the genetic variation that I think is most interesting in that the genome that we each carry in all of the trillions of cells in our bodies is composed of 3 billion chemical bases of information. It is such a vast amount of genetic information. A 1 per cent difference is the amount of variation between each of the genomes in this audience here — Black, White, Asian. Regardless of what your background is, it is 1 per cent difference. That does not sound like a lot of difference, but when you put that in the context of 3 billion chemical letters, that is 3 million differences actually. We are unique in that we all carry these unique differences, but we are also common because 99 per cent of our genome is shared. It is actually passed on. It is our common humanity as individuals. You may develop a particular type of colon cancer, for example. This arises largely due to a mutation in a specific gene. For cystic fibrosis, for example, 70 per cent of individuals who have CF have a very specific mutation, and that mutation is on the background of genetic information that we all carry. In a way, we are all actually affected. I think that is how we have to think about this. The main message that was picked up in the Human Genome Project, when Bill Clinton and Tony Blair announced the first draft of the genome sequencing in 2000, was the common humanity, the shared DNA that we all carry. When you think about the decisions that are eventually made on this, you need to think about not only how they affect the individuals who have these diseases and their families but also how they affect all of society. I think that is really the critical question because it does affect all of society in some way or another.
I just wanted to make two comments. Our autism sequencing project has been funded extensively by Canadian funding agencies: the Canadian Institutes of Health Research for over 15 years, Genome Canada, and the Canada Foundation for Innovation, as well as the National Institutes of Health in the United States and dozens of other organizations, including Autism Speaks in Canada and the United States. We have moved from using what we now call antiquated technologies, these microarrays that Dr. Cohn mentioned, to doing whole genome sequencing because the cost and scale now allow us to do that. I mentioned earlier that we are looking at the genomes of 10,000 families that have autism. The goal there is to try to subcategorize autism so that we can think of a personalized or individualized medical management plan for each individual.
In the last decade, we have come from knowing nothing, zero per cent of the genetic causes of autism — and it is a genetic disorder — to explaining in upwards of 20 per cent of families now, and it is rapidly increasing with every test we do. We can explain to these families why this child is autistic. In some examples, we can give them a confirmatory diagnosis, in other cases give them information on genetic counselling for risk for developing autism in future individuals in the family, and, in some cases, start to give them management plans of treatment protocols and, in some cases, drugs also that their kids should and should not be taking. This has all happened in 10 years, driven by genetic discoveries. I could give you dozens of other examples in other neuropsychiatric conditions. Probably the most advances have been in cancer, but, certainly, it is across every different medical condition. There is a genetic component to it.
Now that the technology has brought us to the state where we can do the genome sequence for roughly $1,000, that has been the Holy Grail number to start to scale up this type of testing. I was the lead principal investigator of a nationwide grant funded last spring by the Canada Foundation for Innovation. It is led out of SickKids in Toronto, at McGill University in Montreal and at the University of British Columbia in Vancouver — $58 million, with provincial partners and institutional partners, to set up a genome sequencing network called the Centre for CGEn, Canada's Genomics Enterprise sequencing network. The state of the art machines that allow us to do this $1,000 genome are being put into these three laboratories across Canada. Ours are running now. In this enterprise, we will have the capacity to do roughly 30,000 genomes per year. This is a research project, but it is to fuel the data that will drive the answers for all of those other families going forward.
The National Institutes of Health in the U.S. just announced, I think it was in January, a quarter billion dollars of investment in the same area, built around President Obama's Precision Medicine Initiative.
We talk a lot about genetics having a role in medicine, but, in fact, genetics will drive how medicine is implemented going forward across all different disorders, conditions and diseases. I think to have that roll out maximally, to impact the taxpayers and all of the stakeholders and families involved, we need to have this type of law to protect so that the information generated can be used in the best way.
I am happy to talk more about the technology and the advances. It's very exciting. There has never been a breakthrough probably in the history of science to the scale of the amounts of data we can develop.
I'll just leave you with a thought. I mentioned the autism project we have. It is a North American-wide project, and the partners we have are Autism Speaks, our group at SickKids, and Google, the world's largest information company. The day we did the first 500 genomes, when we transferred that genetic information to Google — it was actually about a year ago — it was the largest transfer of any type of information that Google ever received. We are talking about vast, massive amounts of data. We are still performing the research, but it is already having clinical impact across all of the medical sciences and medical health.
The future of genetics really is now, and we need to make sure everyone is protected.
The Chair: Thank you. Mr. Scherer, I have been to your lab, and I have seen the story. It is a fascinating story that I would recommend all senators take a look at, particularly in the field of autism and the idea that we will ask you questions on the need to have a law to protect.
We will move on now to Bruce Ryder, who is here with us now. He is a professor at Osgoode Hall Law School.
Bruce Ryder, Professor, Osgoode Hall Law School, as an individual: It is a great pleasure to be here this morning and have the opportunity to speak to members of the committee about Bill S-201, the important initiative that has been brought forward by Senator Cowan.
I am a constitutional law expert. I teach at Osgoode Hall Law School, at York University in Toronto. I am a little bit of an odd ball in my field in the sense that I am part of the generation that grew up with the Charter, but I still remain as interested in the older parts of the Constitution. In fact, the first few articles I wrote were on the federal division of powers in the 1867 Constitution Act, and I continue to research and write in the area. I hope that puts me in a position to assist in your thoughts about this bill from a constitutional perspective. That is what I'm going to focus my comments on this morning. I'll explain why, in my opinion, it is quite clear that all of the bill is a valid exercise of Parliament's legislative powers. I think I'll focus my comments on sections 3 through 7, the provisions that put in place prohibitions and an exemption from the prohibitions and penalties, because it seems to me that that is the only part of the bill that could possibly be controversial from a constitutional point of view, since the amendments to other federal legislation, it seems to me, are obviously valid exercises of Parliament's jurisdiction.
The heart of the issue, from my point of view, and from a constitutional law perspective, is the federal criminal law power and its scope and how it interacts with provincial legislative powers, in particular, the legislative power of the provinces to enact laws in relation to property and civil rights, which enables the regulation of most businesses, most local contractual transactions — transactions that take place within a province, including the regulation of the insurance industry — and most employers, the ones that are not engaged in federally regulated activities.
The federal criminal law power, first of all, is set out in section 91(27) of the Constitution Act 1867. The leading case on its interpretation is a 1949 opinion of the Supreme Court of Canada called the Margarine Reference. In that case, Justice Rand said that a criminal law passed by Parliament, or a law that Parliament is purporting to pass pursuant to the criminal law power, to be valid has to have as its dominant characteristic the putting in place of prohibitions, coupled with penalties, for what he described as a typically criminal public purpose. And then he gave a list of what those purposes might be, like preserving the public peace or order or security, or promoting health or morality. And then he quickly said that it's not a closed list because new social evils arise over time, and Parliament must be capable of addressing them through the criminal law power. For example, it's now accepted that environmental degradation is one the greatest challenges of our time and can be addressed by the federal Parliament, and has been, through the criminal law power.
That's the core of the definition. It has been followed ever since. Are we looking at a law, or provisions of a law, that have as their dominant characteristic the putting in place of prohibitions, coupled with penalties, to address a social evil such as threats to security or order, or threats to health or morality? The Supreme Court of Canada, over the last few decades, has repeatedly emphasized that this is the broadest and most flexible of Parliament's powers. Justice La Forest said, for example, that the power is "plenary in nature'' and that "this Court has been careful not to freeze the definition in time or confine it to a fixed domain of activity'' so that Parliament has the criminal law power — a flexible mechanism — for addressing new social evils. Even when it's addressing areas that overlap with provincial jurisdiction, Parliament can take a leadership role through the criminal law power.
When my students think of the criminal law power, they think we're talking about the Criminal Code. Yes, we are talking about the Criminal Code, but not just the Criminal Code because there is a wide range of federal statutes that have been upheld under the federal criminal law power, and I list them in the notes that will be circulated. I don't need to go through them all; let me just mention a few.
Legislation dealing with promoting competition, or what back in the day they used to call anti-combines legislation, has been upheld under the criminal law power. Consumer protection provisions of the Food and Drugs Act, the Controlled Drugs and Substances Act, the toxic substance provisions of the Canadian Environmental Protection Act have all been upheld under the criminal law power. There are offences in the Criminal Code that deal specifically with the securities industry. For example, the prohibition on issuing false information in prospectuses as a means of marketing shares — it is prohibited in the Criminal Code, upheld by the Supreme Court of Canada. The prohibited activities provisions in the Assisted Human Reproduction Act place prohibitions on cloning, or the sale of reproductive material, or compensating a surrogate. These were upheld by the Supreme Court of Canada a few years ago in Reference re Assisted Human Reproduction Act. Those are examples of the scope and the flexibility of the criminal law power.
The courts have also very broadly defined provincial jurisdiction to pass laws in relation to property and civil rights, which is in section 92(13) of the Constitution Act, 1867.
An example is the famous case of Citizens' Insurance Company v. Parsons, which was one of the first decisions of the Privy Council in London interpreting our Constitution. They said that the regulation of the insurance industry is a matter of provincial responsibility. Parliament can target international insurance transactions or interprovincial transactions as it can in any industry, but for the most part insurance contracts are concluded within a province, and therefore the Privy Council said they fall within provincial jurisdiction. The courts have followed that ruling ever since. It was released in 1881.
Parliament didn't always take kindly to provincial jurisdiction. In the late 19th century and early 20th century, there were many federal attempts to regulate the insurance industry by putting in place licensing schemes and making it a criminal offence to not comply with the terms of a licence. The court said Parliament can't go there; the regulation of the insurance industry is a matter for the provinces, with some exceptions, as I mentioned, for international or interprovincial transactions.
But in all of those cases that struck down federal attempts to regulate the insurance industry, the courts were dealing with federal legislation that sought to regulate the industry in a detailed and comprehensive manner, and the courts found that the dominant characteristic of the legislation, or its pith and substance, was to regulate the insurance industry. Parliament can't do that.
If we turn our eyes to Bill S-201, the controversial parts — I don't think they're controversial, but others may disagree with me — are sections 3 to 7 of the bill, in which the prohibitions and penalties are broadly framed. The question is, and thinking about constitutional validity, are they in pith and substance in relation to criminal law? Is their dominant characteristic to put in place prohibitions, coupled with penalties, to combat a social evil? That's the issue.
Or can we look at them and say are they in pith and substance in relation to the regulation of the insurance industry, or some other provincially regulated industry or provincially regulated employers?
To go about deciding what the answer to that question is, the courts look at the purpose and the effects of the legislation. They'll look at everything in the legislation: its title, what the provisions say, what the likely practical effects of the legislation are. They will look at the legislative history and see whether Parliament is concerned about combatting a social evil or is trying to surreptitiously regulate matters that fall within provincial jurisdiction.
When we engage in that study — Where is the legislation coming from? What does it say? What is its title? What do the provisions actually do? What are their legal effects? — it seems pretty obvious to me that the pith and substance is to prohibit genetic discrimination. The motivation is that we have a problem, from the point of view, as we've heard, of the best interests of Canadians from a health perspective, and prohibiting genetic discrimination will encourage people to undergo genetic testing, which will have enormous health benefits. That's how I understand the genesis of this legislation. That's why its title is the "Genetic Non-Discrimination Act.''
When we look at the provisions that I mentioned in sections 3 through 7, what do they do, exactly? They put in place prohibitions on requiring individuals to undergo genetic testing — you can't be forced to; on requiring individuals to disclose the results of a test; and on the use of genetic test results without written consent. These prohibitions apply, as the language of the bill frames them, to "any person.'' They are directed at all of us. Anybody. They do not mention a particular industry or any type of actor. Section 7 puts in place exemptions from the prohibitions for health care practitioners and researchers, which is not uncommon in criminal law or laws in the criminal law power.
A good example is the Tobacco Act. It's a valid federal criminal law. It has prohibitions on tobacco marketing that are very comprehensive, but it has exemptions for tobacco marketing in certain, narrow circumstances. The Supreme Court of Canada said that's not a problem. It's just defining the scope of the criminal prohibition with some care and precision. Section 7 puts in place very serious penalties for the violations of the prohibitions in sections 3 through 5. The severity of the penalties is not determinative of whether a law is criminal, but it's a good indication, if the bill is passed, that Parliament takes these wrongs seriously and is taking a punitive, or criminal, approach to them.
I think for those reasons it's evident to me, in any case, that the dominant characteristic of this bill, or those provisions in particular, is to put in place prohibitions, coupled with penalties, aimed at protecting individuals from the social evil of genetic discrimination. The pith and substance of those provisions, therefore, falls squarely within the definition of criminal law followed by the Canadian courts since the Margarine Reference in the late 1940s.
The provisions don't amount to the minute regulation of an activity within provincial jurisdiction, such as was the case with some of the federal legislation passed back in the early 20th century that sought to regulate the insurance industry, or that was the case with some of the regulated activities provisions of the Assisted Human Reproduction Act that were struck down by the Supreme Court of Canada a number of years ago. Those amounted to an attempt, in Justice Cromwell's words in that opinion, to minutely regulate all aspects of clinical practice and research activities related to assisted reproduction.
That's not what is going on here. You don't have a licensing scheme or some elaborate form of regulation; you have prohibitions, coupled with penalties. That's what a criminal law usually looks like.
Now, it's true that sections 3 through 7, and we could say the bill as a whole, perhaps, have important impacts on matters that fall within provincial jurisdiction. For the constitutionally naive, that's a red flag: "Oh my, this has important impacts on the other levels of government's jurisdiction.'' That's true. That happens all the time in Canadian constitutional law. There is a doctrine well known to constitutional scholars as the double aspect doctrine, which means there are many subject matters that have a double aspect in the sense that they can be addressed from a federal point of view and from a provincial point of view.
And it's not uncommon, as you know, for us to have overlapping legislation in many fields in this country. A good example is securities regulation. It's primarily provincial, but we do have provisions in the Criminal Code prohibiting certain fraudulent practices related to trading in securities.
Another example is highway traffic. Many Criminal Code offences are in that area, but the provinces all have highway traffic acts that overlap with and supplement the Criminal Code approach in some way.
So when we're in areas of shared jurisdiction, often it's the role of the federal Parliament to show leadership and set out some basic standards, and the provinces then often step in and may supplement the federal law in some way, and fill in gaps and details. And they are allowed to do that, so long as their laws don't contradict the federal legislation — so long as they are consistent with federal legislation because, if not, they will be rendered inoperative by what's known as the paramountcy doctrine.
So the fact that federal criminal laws impact on provincial areas of jurisdiction does not, in itself, render them unconstitutional; rather, the courts have characterized much of the federal criminal law as dealing with double aspect matters. As I said, securities regulation is one example and highway traffic is another.
In my view, so too is genetic discrimination. It can be validly addressed by the provinces, pursuant to subsection 92(13), and validly addressed by Parliament from a criminal law point of view, pursuant to subsection 91(27), which is exactly what clauses 3 to 7 of this bill seek to do.
Thank you very much.
The Chair: Thank you, Mr. Ryder. I will open it up for questions. We have 30 minutes to have a conversation about this important bill and subject.
Senator Frum: First, I thank the distinguished panel for being here and for the excellent work that you do.
Professor Ryder, my question is for you, because, as our first two witnesses show, we have a problem. I don't think anyone doubts that. The big question for this committee is whether we have a federal problem or a provincial problem, which is what you addressed in your remarks. If I understood what you said, you believe this legislation would safely fall into federal jurisdiction if its pith and substance is to address a social evil. Is that a fair reduction?
Mr. Ryder: From the point of view of the criminal law power, yes.
Senator Frum: Okay. When we had representatives here from the insurance industry, their position was that this bill attacks the principle of equal information, which is the foundation of their industry. I imagine they would say that you're really calling their entire industry a social evil, because they ask people for information about themselves and that there be a good faith agreement and exchange. Based on that, they come up with a contract.
The logical extension, if I correctly understand what you're saying, is that there is a social evil here, but the social evil is the judgment of the insurance industry. And the insurance might say they're only applying the principle of equal information, that they are in the business of making judgments.
That's my question.
Mr. Ryder: Obviously, there is an interesting debate there, and there are many different approaches that can be taken by Parliament in addressing this issue.
I only want to address the question of constitutional validity. While I understand their concern, I don't think it goes to the question of constitutional validity. It may raise an issue about whether there should be some amendments to the bill or perhaps a different approach taken within the bill. I'm not an expert on those issues; I don't want to purport to be.
But that concern doesn't, in my view, undermine the criminal law nature of clauses 3 through 7.
I will give an example, because it reminds me of an argument raised by the advertising industry at the time the Tobacco Products Control Act was going through Parliament. It was later raised by the tobacco industry and its supporters in the court challenge to that legislation; it's now called the Tobacco Act. But its main focus is to regulate marketing, as you know, and it prohibits advertising pretty much in a blanket sense across the country, with a few exceptions.
One of the arguments that was made, both in the legislative process and in the courts, was, "Advertising isn't evil. That's our business; we are advertising a lawful product. How can you say that this is a valid criminal law?'' The response that the Supreme Court of Canada gave through the opinion of Justice La Forest was that this is a really difficult issue — trying to figure out how to discourage Canadians from taking up an addictive habit that is so damaging to their lives and health.
In formulating appropriate responses to that social evil, because the social evil, of course, is the health harm resulting from smoking, Parliament has freedom to design what it considers to be the most appropriate response. Yes, it's true that advertising itself isn't the evil, but there was a reasonable basis to presume that prohibiting it would help others from not being encouraged to take up the habit.
I think there is a similar theory here that would be accepted.
Again, I'm only addressing the constitutional validity from a criminal law perspective. You could argue that some of the contractual activities that are prohibited by the bill are not in themselves evil, but it's the general genetic discrimination that is the evil being targeted because of the negative health consequences it can have, so it's open to Parliament, in my view, to choose the legislative approach that seems likely to be effective in combatting that social evil.
Senator Frum: But we can agree that we are talking about a very morally or legally complex issue —
Mr. Ryder: Yes, absolutely.
Senator Frum: — because, again, the whole premise of insurance, which people don't like, is that they discriminate as between clients. They choose to charge some more than others based on their physical qualities. That's what they do every day. That's their job.
So to then label that as a social evil that can be legislated against strikes me as a big task.
Mr. Ryder: I hope I made clear that this is a problem that's relatively new and is growing in importance quite dramatically. It will hopefully receive a great deal more legislative attention, at both the federal and the provincial levels.
But it seems to me it would be very important for Parliament to be considering this issue and hopefully taking a leadership role in the area, just as in other areas, using the criminal law power. The toxic substances provisions in the Canadian Environmental Protection Act are a good example. That legislation does not stop the provinces from continuing to address the issue and Parliament from considering revisions and alterations, but it's still a very important flagship — federal statute — putting in place national standards.
The Chair: Thank you very much. We have two other senators on our list right now. Just briefly, though, I'm struck by the two doctors' statements. They are powerful statements. Dr. Cohn, you talked about how it's paralyzing that you can't do your job, yet you're a clinician who wants to do his job. And Mr. Scherer, you talked about a law to protect this immense roll going on in terms of genetic testing, and more and more discoveries. Is it going to get worse, so that you cannot give, as you described, your best care? I was struck by the power of your statements.
Dr. Cohn: From a clinical point of view, as we are moving forward with our technology and making more and more diagnoses I will be able potentially to offer much more genetic testing targeted to my patients than I am right now. It's actually not a new problem. It's been rising to the surface, and that's probably big thanks to Senator Cowan, who just took it on.
I think the more we are able to make genetic diagnoses, the more we will be dealing with these issues for sure. It is important to understand one more aspect: The more diagnoses we make, the more we understand about disease, and we are beginning to develop concepts of treating our patients. That's not tomorrow; that's maybe just a few years away. Think about the last story I told you about not just providing a diagnosis, but having an impact on medical care of patients as we are moving on.
Mr. Scherer: I would second and further the point that the number of new medicines based on gene-based discoveries and treatments that are coming is increasing exponentially. Quite often, now, you would have a companion genetic test to inform on the drug that you may take or the dose of that drug. This is the field of, as I said earlier, precision medicine, which some people call pharmacogenetics, depending on what you are focusing on. It is being driven by the genetic discoveries.
I think the huge leap in progress has been our ability to get the whole genome sequence. We've used this term a lot. Let me back-step and tell you why it is so important. For the last 20 years we have been looking at the genes which comprise about 1 per cent of the genome; that's our DNA. We know quite a bit about that, but it only explains maybe 25 per cent of the genetic forms of all the different diseases I mentioned. To get to the 99 per cent of the rest of the genome and the DNA that's involved in turning these genes on and off and interacting with the environment to do that — that's what this technology called whole genome sequencing allows you to get at.
We are only looking at that data for the very first time now. We are literally in the pioneering days, I would say. I was involved in the Human Genome Project run by Craig Venter, who was the first identified individual to have this genome sequenced, and we published that with their group in 2007. We've got 7,000 families from autism done, and that's all happened in the last 12 months. We are starting to get a much better understanding. The numbers of these associations from diagnosis to altered plans and medical management is going to increase exponentially. Now is the time.
I've given talks to insurance companies, and I was very neutral in my comments in those discussions, a few years back, because we didn't have the technology to get the entire genome on. That's going to change everything. This could be the Achilles heel to our progress if we don't deal with this now. In other countries, like the United States, my scientific collaborators don't have this issue because they passed their bill, and in other countries too.
In a way it is quite surprising to many Canadians in the field, because many of the seminal discoveries — cystic fibrosis we heard about, muscular dystrophy, and Huntington's — were made in our country decades ago, when I was student in the laboratory. It is unbelievable to me it's the one thing we are behind the United States in. We have always been ahead in genetic science. We need to get this done.
The Chair: Thank you very much.
Senator Cowan: Thank you, and thank you so much for weathering the storm to be here today. It is very important. Some of us were in attendance the other night at a reception held by Genome Canada, and they featured the outstanding work being done by geneticists from coast to coast. One of the studies that intrigued me was one that's being undertaken in the province of Newfoundland and Labrador. I'm not sure whether either of you could speak to that. I don't know if you're directly involved and could tell us about the study and its importance. How might the kind of protection that's envisioned in this bill — or the lack of protection — impact the work of that study?
Mr. Scherer: Several such studies are going on around the world. The one you mention in Newfoundland is relevant because it's a Canadian study, and there is a significant amount of information on the public record, so I think everything I'll say that I know is public.
Senator Cowan: It will be once you say it.
Mr. Scherer: There is a group that's very interested in coupling this powerful information of genome sequencing to medical health records — e-health and electronic health records — and trying to further enable this concept of precision medicine for the province of Newfoundland. It is a unique population in terms of heritage and ancestry. Genetic endowment — a term I used in my opening comments — and genetics play a huge role in medical care there.
The idea there, I think, is to sequence 100,000 genomes from individuals enrolled in a research study coupling right through the longitudinal data captured through their electronic health records. They are fundraising now and will be initiating that project over a 10-year period, we hope using the genome sequencing centres in Toronto and Vancouver. In fact, they will be in Toronto talking to me tomorrow.
In Ontario we have a similar project. We have started already. We are coupling whole genome sequencing to the clinical databases for the province of Ontario, and cancer registries in British Columbia and Alberta. In every province this is happening. There are, quite literally, hundreds of projects ongoing, paid for by provincial and federal tax dollars, to fully explore the capabilities of how genetics can improve health for our population.
Dr. Cohn and I started the Centre for Genetic Medicine a few years back, and we did it to prepare the hospital for the day, which is inevitable, that every child who comes into the hospital will have their genome sequenced. That will happen. It is a tool of surveillance that will inform decision making. Once the prices fall into the $100 range — that's not that far at all; it will happen — we need to prepare both on the scientific, or medical, and the legal and ethics sides to protect the information.
The last point I would make is really to come back to the technology. It's unbelievable how fast it is moving. Somebody will know Moore's law of computation that there is a doubling of the ability to store and process information every year that outstrips any type of technical law. Sequencing has exceeded that 10-fold. When we started the autism project five years ago, roughly, it was in the $5,000 range. We are now in the $1,000 range, and I fully anticipate that, probably in the next five years, it will be $100 — cheaper than an expensive pair of shoes. It will be ubiquitous. We are going to figure out the ability to use the information, and then we have to be protected in a way to use it in the most maximal applications for the families involved.
The Chair: Thank you very much, doctor. We have four senators on the list and 15 more minutes with this panel.
Senator Ataullahjan: I thank you for your presentations this morning. My question is to the two doctors. Have you ever had any discussion with your provincial governments about the need or the importance of genetic testing? Have they shown any interest in this conversation? Because at the start of the study we did write to the provinces, and I think to date we've heard back from two to say that they have nothing further to add.
Dr. Cohn: I can only speak on behalf of Ontario. We had conversations with a senator there who has moved forward with a slightly different bill to protect genetic discrimination. We met about one and a half years ago. I don't have a follow-up from this — I didn't hear because elections happened in between.
However, there clearly have been discussions previously in Ontario, and I personally had them.
Mr. Scherer: I will put a twist on your question. In every major medical school setting across Canada, there are a Dr. Cohn and a Mr. Scherer, so you would discuss all genetic-related issues with them, because they are funded through the ministries of health of those provinces.
Historically, we talk to them regularly about implementing specific gene-based tests that serve that population. For example, the cystic fibrosis mutations I mentioned are found only in Caucasian populations. In Toronto, for example, we have new populations coming in based on the immigration in the country every year, and they bring their own types of genetic disorders. We have to then set up those tests in the hospital. So we would go to the ministry and ask them for support to set up those tests.
That is based on one gene at a time. As Dr. Cohn said, we sometimes do panels. The real game-changer technology, again, is with the whole genome. We get all the genes with one test. So you are not only asking the specific question of what that patient is being clinically assessed for, but you get everything else, too — the full monty. That is why the law is so important: You need to protect against all of that other information you are dealing with.
The short answer is that yes, we have these discussions with respect to implementing the genetic tests and technologies all the time, and we talk about the information protection agencies and things like that.
We need guidance on discrimination laws. That is what we are doing here today.
Senator Nancy Ruth: This is about the insurance question. My assumption is that as an obese woman going out now to buy life insurance at my age, I would be paying an extraordinarily high premium, and all the risk would be borne financially by me.
The question for me in the issue of this legislation is that if we are to give this gift of health to Canadians, to some extent we may require insurance companies to spread the risk throughout all their policyholders in life policies.
Mr. Scherer, my question to you is: When you talk to insurance companies, do they ever talk about the moral issue of risk or risk in any form?
Professor, I am assuming that if we pass the law and the insurance companies don't like it, they will litigate. Is that not a reasonable way in Canada to sort things out — in the meantime protecting Canadians so that they can get genetic testing?
Those are my two questions. Has the insurance industry said anything about risk in terms of spreading it over all policyholders?
Mr. Scherer: My interactions with them have been at conferences where I give the plenary talk and talk about the things I just mentioned to you, and the comments were designed based on those presentations. They are just as interested and excited at the potential as all of you around the table here, because they have family members, in some cases themselves, who have benefited from genetic testing.
The recommendations I made in my last slide are ones made at a time when this technology we are talking about now and that will change everything did not exist, so it was a different era.
It is important to state that individuals who work at insurance companies are also users of this information, as are their children and their families.
Dr. Cohn: I would like to answer part of your question, too, because I actually did have a conversation with the industry about the risk. If you dive deeper into case scenarios, more often than not you must ask whether genetic knowledge will empower you to protect your health, stay alive longer and actually contribute to the overall pool of premiums.
Senator Nancy Ruth: Well, okay.
Dr. Cohn: I think that is important, because when we talk about the whole genome, looking at everything, the so- called secondary findings are findings that will benefit us because we can do something about protecting ourselves.
I do understand your point, senator, about the equality issue. There are certain things that you alluded to which we have under control and certain things we are born with. We do not have our genetic code under control. That is what we are given, and we have to deal with this. We can deal with the fact that I want to smoke or exercise.
So we need to put that into the equation when you have that discussion, I think. This discussion about risk often changes the scope.
Senator Nancy Ruth: That is interesting.
Mr. Ryder: Very quickly on the last point: These things can always be worked out in litigation, for sure.
I would take the view that it is extremely important for Parliament to exercise care and not pass unconstitutional statutes because of the costs that imposes on all of us, really. We shouldn't put people to the burden of litigating to challenge unconstitutional law.
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. That doesn't mean that there aren't other issues; there are all kinds of other important issues to discuss. However, 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.
That doesn't mean there is no risk. I could be wrong. I don't think I have ever been wrong before, but maybe there will be a first time. 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.
And, yes, be comforted by the fact that those who disagree with you do have the option of challenging the legislation in court.
Senator Hubley: I believe Senator Nancy Ruth has asked my question, but I was interested, Mr. Scherer, you mentioned you have been speaking to members of the insurance industry. You qualified that it was at conventions and things of that nature.
Dr. Cohn or Mr. Ryder, have you had any conversations with people from the industry? Have they approached you, or are they interested in learning more about the genome issues?
Dr. Cohn: They are certainly interested. We actually had two representatives from the life insurance industry come to our genetic grant rounds and giving a talk, giving their perspective and engaging in a discussion.
Senator Munson started this by saying it is not about confrontation, and it is not about confrontation; it is about a conversation. None of us here would like to put anyone at a disadvantage, neither the insurance companies nor the people insured by the insurance companies. It is about a dialogue. It is very clear we have to find a solution.
I have encouraged the industry to continue some of the conversations. I am not sure that has happened to the degree I would want it to, but that doesn't mean that it could not happen.
Senator Hubley: Do you have anything else? I am wondering how involved the insurance companies have been in educating themselves on the issue.
Mr. Scherer: In my experience, they have been following what has been happening, primarily in the United Kingdom.
I will back-step here. I also direct the McLaughlin Centre at the University of Toronto, and we fund projects — and I think you heard from Dr. Bombard earlier — to study not only what is happening in Canada but also what has happened in the United States, the U.K. and other countries where this has gone through.
The insurance company would often interact through one of us or one of the fund investigators to try to solicit information that has played out in other jurisdictions and get our opinions on how that might happen. My role has been to advise on the technology and things I have talked about.
They haven't been so interested because it really hasn't affected them that much, I would say.
Senator Martin: My apologies; I was late from a previous meeting.
Based on your answers, I have a question to all three of you. Some of the things you were saying and in your presentation, you have answered our question about some of the constitutional issues, but I was reminded of studies that I did in the Standing Senate Committee on Social Affairs, Science and Technology where we looked at the health system of our country, the e-health records, the need for interdisciplinary approaches to health care and just the complexity of coordinating all the parts.
I am surprised that the provinces have not weighed in in the way that I would have expected them to, because this is provincial jurisdiction. I know that we have incredible technology and innovation in Canada, but sometimes I feel as though we have the technology, but everyone else has to still catch up to that technology.
With the e-health records, there is plenty of funding. We have done our very best to lead the horse to water, but actually making it work effectively is still a challenge.
I understand that we have to take a federal role and that there is a role in the criminal law power where we have that right, but I am challenged with this feeling that we are just beginning this conversation. It is so important.
I support the principles of this bill, and I feel there needs to be protection for individuals. When I say "premature,'' I mean as a country, do we still need to sort out these pieces and coordinate it, or maybe in five years' time, when the technology is absolutely sound or more affordable? My question is, is it the right time?
Dr. Cohn: The last part of your question, I can answer. This time is the right time. I think it is important.
I would like to emphasize what I said before, that we will have more and more of these issues as technology is integrated into clinical care, but genetic discrimination happens if I just look for one gene. It doesn't if I just look at everything. It happens right now, and it happens right now in my clinic.
The two examples that I talked about are examples that are based on one single gene disorder, not moving technology forward. I think Mr. Scherer may be able to talk about the fact that we should not be lagging behind so that technology can be implemented, but it is now that we have the problem. We need to act now.
Mr. Ryder: Just a quick word in response, Senator Martin.
I think the law often falls behind the development of new technology and the emergence of new social problems. There is often a lag. Not always, but it is very common.
"Is this the right time?'' is a good question, but I see it in part from that perspective. There hasn't been any action on this important issue in Canada yet, while there has been in a number of other jurisdictions. Is it the right time to delay further? I think not.
I would ask this: Is moving forward with this legislation likely to advance the conversation about what the appropriate solution should be in conversation with the provinces? Personally, I would think the answer to that is yes. The first legislative foray, so to speak, isn't the end of the conversation. It will probably generate all kinds of new conversations.
The last thing I want to say is that if we think of filling in the legal picture here, the provinces have all sorts of important jurisdiction. One context in which I work is with the Ontario Human Rights Code. Every jurisdiction in Canada has human rights legislation prohibiting discrimination on a range of grounds, including disability.
One of the reasons why the provinces may not be acting with urgency is they may think that while people experience genetic discrimination, the ground of disability will provide them with some protection because it protects against not just actual disabilities but perceived disabilities or the risk of future disabilities.
It is quite likely that that ground will be found to embrace the subject matter that is being addressed in this legislation, but the human rights process is not easy to invoke. Dealing with a complicated issue like this on a case-by- case basis, we will likely see developments from the human rights tribunals across the country in the years ahead. I don't know; I am just speculating.
It may be one of the reasons for some legislative hesitation at the provincial level, namely that we can let this go through the complaints process to human rights commissions and tribunals across the country and see what emerges. They can help work out the appropriate principles. That hasn't happened yet, but it may.
If that is one of their reasons for hesitation, I don't find that convincing, because the litigation process before human rights tribunals isn't a good way of dealing with such a large, systemic issue. It is better to have a stronger and broader legislative approach.
The Chair: Thank you for your testimony today. I will wait in great anticipation for the full monty in genetics, whatever that will look like. I know it is a serious matter, but I couldn't get that picture out of my head.
Our second panel this afternoon is the Canadian Human Rights Commission with Marie-Claude Landry, Chief Commissioner; Marcella Daye, Senior Policy Advisor, Policy, Research and International Division; and from the Office of the Privacy Commissioner, Daniel Therrien, Privacy Commissioner; and Patricia Kosseim, Senior General Counsel and Director General.
[Translation]
Ms. Landry, we will start with you.
Marie-Claude Landry, Chief Commissioner, Canadian Human Rights Commission: Honourable members of the committee, thank you for inviting the Canadian Human Rights Commission to contribute to your study of Bill S-201, An Act to prohibit and prevent genetic discrimination. I would like to introduce my colleague, Marcella Daye, Senior Policy Advisor in our Policy, Research, and International Affairs Division.
We are here today to reiterate some important messages my predecessor shared with this committee in 2014.
[English]
First, prohibiting discrimination based on genetic characteristics would protect Canadians from the risk that their genetic information could be used against them.
Second, adding genetic characteristics as a prohibited ground would enable Canadians to bring complaints of genetic discrimination to the commission without having to link them to other grounds. This would improve access to justice for everyone, especially people in vulnerable circumstances.
Finally, by making this protection explicit in law, it would be clear that everyone has a right to be treated equally, regardless of their genetic characteristics.
First, allow me to briefly tell you about who we are and what we do. As you may know, Parliament designed the Canadian Human Rights Act to promote equality and protect Canadians from discrimination based on grounds such as age, sex, disability, race and so on. There are 11 grounds in all.
Our vision is a society where everyone is valued and respected.
Genetic research holds tremendous promise. It has inspired new methods of diagnosis and treatment. Some believe it will revolutionize health care. But while many recognize the benefits, there remains a great deal of uncertainty.
Genetic research is accelerating. It's normal that people should be curious about what their genes can tell them. Do I have a marker for a hereditary illness? Have I inherited a propensity to be a worrier or, on the contrary, a fearless leader?
It may one day measure other propensities such as personality traits. For example, genes affect our sense of purpose, how well we get along with others and our propensity for learning. These are all important traits when it comes to hiring.
Genetic information about our genetic makeup is deeply personal. We have heard that some individuals choose to avoid genetic testing out of fear that the very tests meant to help may one day be used against them. They fear they could be discriminated against by employers, perhaps, or in service contracts because of what their genes say about them.
[Translation]
And who can blame them? Our rights in this area are not clear. Genetic discrimination is an emerging area of law that remains virtually untested. Canadian jurisprudence in this area is almost non-existent.
The commission does have authority, under the Canadian Human Rights Act, to accept discrimination complaints regarding genetic characteristics, but only as long as they are linked to another ground, such as disability. Clearly, this is an overly narrow approach.
What if an employer were to require certain genetic profiles as hiring criteria? Would that discriminate against people who do not conform, but may have the required education and experience? Is this the kind of society we want in Canada?
Parliament has long recognized that laws must evolve in order to keep pace with social and technological changes. Adding genetic characteristics to the list of prohibited grounds under the Canadian Human Rights Act would help accomplish this. It would allow the commission to accept genetic discrimination complaints unrelated to existing grounds.
Even more importantly, it would make these protections explicit. It would make it clear that everyone has a legal right to be treated equally no matter who they are or what their genetic makeup says about them. And it would help employers understand their obligations and build in protections to prevent discrimination.
In conclusion, the commission supports Bill S-201. We believe that genetic tests are meant to help you. Without these protections, genetic information could actually be used to make your life more difficult. Taking a test that could help save your life should not have to be a calculated risk.
Thank you. My colleague, Marcella Daye, and I will do our best to answer any questions you may have.
[English]
The Chair: Thank you very much for your testimony. We will hear now from the Privacy Commissioner, Daniel Therrien.
[Translation]
Daniel Therrien, Privacy Commissioner, Office of the Privacy Commissioner: Mr. Chair, members of the committee, good afternoon. Thank you for your invitation to present our views on the most recent version of Bill S-201. Accompanying me today is Patricia Kosseim, our senior general counsel.
We support the aim of the bill and welcome the general prohibition on the collection of genetic test results as a requirement for providing goods or services or entering into a contract. And for those individuals who wish to provide such information by choice, we support the proposal that consent be in writing. Such measures provide Canadians with more meaningful control over their personal information and are positive from a privacy perspective.
Advances in science together with ever more powerful and sophisticated computing technology have significantly lowered the cost and increased the availability of genetic testing, and even whole genome sequencing, which can be much more revealing.
Last October, the International Conference of Data Protection and Privacy Commissioners discussed the challenges arising from society's increasing ability to collect, analyze and use genetic information. It recognized that, while there are clearly many benefits that do and will continue to stem from genetic information, the collection and use of such information could lead to a variety of risks, including discrimination or the denial of services on the basis of genetic predispositions.
It is crucial that individuals remain in control of their data, receive appropriate information about the options available to them and have their choices respected. This is particularly important in the case of genetic test results that can reveal highly sensitive information about individuals and their families.
We remain mindful of the competing interests both for and against the collection of genetic information. However, requiring individuals to undergo genetic tests or to disclose existing test results as a condition for purchasing goods or services or entering into contracts is, in data protection terms, both inappropriate and unnecessary at this time.
Without the assurance that individuals' genetic information will not be used adversely against them, individuals, and society as a whole, risk forgoing the benefits of such testing out of fear of stigmatization and discrimination. Therefore, we agree that the right thing to do at this time is to adopt a general prohibition against required collection, which parliamentarians can eventually review should circumstances so require.
[English]
I would like now to turn to two specific provisions in the bill.
The addition of clause 5, which proposes to prohibit the collection or use of genetic test results without written consent, is most welcome. When read together with sections 3(2) and 4(2), we understand that even if consent were to be sought in writing, the prohibition against making collection or use of genetic test results a condition of service still stands.
The addition of the word "disclose'' after "collect and use,'' would afford individuals even greater control over their personal information and would be consistent with our privacy laws.
With this addition we are of the view that clauses 3, 4 and 5 represent a good and balanced way of respecting the wishes of those who want to share their genetic test results and those who would prefer not to.
The bill also proposes to amend both the Privacy Act and PIPEDA by adding "information derived from genetic testing'' to the definition of personal information. In our view, adding to the definition of personal information is at least unnecessary and perhaps harmful.
In both the Privacy Act and PIPEDA, personal information is broadly defined as information about an identifiable individual. Information derived from all types of genetic testing is already covered by existing definitions. Adding genetic information as an example could have the unintended consequence of narrowing the definition of personal information.
In the case of PIPEDA, information derived from genetic testing would be added as a specific example of personal health information. This choice of words, with the emphasis on health, would exclude information derived from tests other than health-related, such as ancestry, paternity, nutritional, recreational or behavioural disposition tests. It's important to remember that the definition of personal health information was included in PIPEDA for purposes of interpreting a transitional clause which is no longer legally relevant. Including information derived from genetic testing in the definition of personal health information now would serve no useful purpose and would only add unnecessary confusion. We are therefore recommending that the committee recommend deleting clauses 11 and 12 from the bill.
Thank you for your attention. My colleague and I will be happy to take questions.
The Chair: Thank you for your statement.
Senator Frum: To follow up on your last point, Mr. Therrien, you are proposing that we delete those clauses. Is there no other way to amend the words "personal health''? Why is it necessary to delete the entire clauses?
Mr. Therrien: We are getting into technical drafting here. There are two reasons; one, the expression "personal health information'' is no longer relevant, so it does not serve any purpose to define it further, and the general definition in both statutes of "personal information'' is sufficiently broad that it covers genetic test results.
At a minimum, it is unnecessary and redundant, and when Parliament defines terms, it may be then interpreted by the court as meaning to restrict, and it's a risk that I think you should consider. And personally I would recommend that the current broad definition of personal information is entirely sufficient.
Senator Frum: Thank you. On that point, in adding genetic discrimination to the Canadian Human Rights Act that will be in addition to disability, you mentioned in your presentation that disability is narrowly interpreted. Is that really a fair statement that the commission in the past has defined disability on a narrow basis?
Marcella Daye, Senior Policy Advisor, Policy, Research and International Division, Canadian Human Rights Commission: I think that our position on definitions is very similar, that adding definitions will unduly narrow our act. Our grounds are generally interpreted broadly and exceptions are interpreted narrowly, and for that same reason we prefer not to have definitions in our act.
There is a very specific definition of disability in our act which does not narrow it, and we support this as a stand- alone addition to our act.
Senator Frum: To be clear, you support this addition?
Ms. Daye: Absolutely.
Senator Frum: Thank you very much.
Senator Cowan: Thank you for being here today. We appreciate your advice on the bill.
My question is for Mr. Therrien. At the previous panel we heard strong opinions expressed by the insurance industry and folks appearing with them that the passage of this bill would not only have significantly adverse effects on the bottom line of the insurance industry, but it would cause rates to rise significantly and many Canadians would not be able to afford or would fail to take out insurance coverage, and that would affect the ability of large numbers of Canadians to protect themselves and their families.
On July 10, 2014, your office issued a statement. It was a statement on the use of genetic test results by life and health insurance companies. That statement referred to two papers that your office had commissioned, as a result of which you concluded that at the present time and in the near future the impact of a ban on the use of genetic test results by the life and health insurance industry would not have a significant impact on insurers or the efficient operations of the insurance markets. Then you distinguished between the monogenetic and the multi-factorial disorders but said that the conclusion was, based on these expert conclusions, that collection and use of existing test results by insurance companies would not appear to be necessary for the legitimate business needs of the industry at the present time.
Is that still your view of your office?
Mr. Therrien: That is still our view as to the state of the evidence at this point, yes. We went into this analysis because under PIPEDA, which is the relevant statute here in determining the legality, the collection, use and disclosure of personal information was governed by a number of criteria, including whether the collection of information, in this case genetic test results, is necessary for a business purpose. So it's in that context of analyzing whether the collection of these tests for a necessary business purpose — here the commercial viability of insurers — that we commissioned expert reports to help us determine whether the evidence supported a conclusion in terms of necessity. Overall, the evidence of the experts was that it did not demonstrate that the collection of this information was necessary for a business purpose.
Senator Cowan: Do you mean for the efficient operation of the insurance industry?
Mr. Therrien: That's correct.
Senator Cowan: Is that still the position of your office?
Mr. Therrien: Yes.
Senator Cowan: Thank you.
The Chair: I'm curious about the Canadian Human Rights Tribunal in relation to specific tribunal decisions and dealing with jurisprudence and some decisions that may have been made and how it might affect future cases on persons with disabilities. Would you have some examples for us to help us along here?
Ms. Daye: Just to be clear, we are here from the commission, which is not technically the decision maker on complaints, whereas the tribunal is, but if you're asking about case law, there is very little in this area stemming from complaints to the federal tribunal or to similar provincial agencies.
The one case that is of relevance specifically on the propensity for a disability is a case called Boisbriand, which you probably have from the previous Senate committee hearings in your history, and that Quebec case laid out the principle that disability included perceived disability. There is very little case law other than that on genetic discrimination specifically. However, the testimony that has been provided from your other witnesses really shows that the issue simply has not hit that watermark yet, but it could in the future.
We really support the provision of a safety net and some protections to support the genetic research and the medical community to move forward and to allow Canadians to benefit from this technology without the fear of discrimination.
Ms. Landry: And knowing their rights.
Ms. Daye: Absolutely.
Senator Ataullahjan: Thank you for your presentations this morning. My questions are to you, Mr. Therrien. Have you had any conversation with your colleagues from the provinces about the question of genetic discrimination? What did they tell you about the human rights challenges?
Mr. Therrien: I have not personally discussed this with provincial colleagues. Has the commission?
Patricia Kosseim, Senior General Counsel and Director General, Office of the Privacy Commissioner: In fact, the position statement that was referred to earlier by Senator Cowan was supported by our provincial counterparts in B.C., Alberta and Quebec.
The Chair: I'm curious as well. If nothing is done — let's say this bill is not passed — do you have a viewpoint of what this would mean with the way things have been done and how it will affect the future? We have heard compelling evidence from people on the genetic side about what they are doing, about thousands and thousands of more tests, and so on. There will be that battle between insurance companies and people who fear taking a genetic test and therefore are not receiving the proper health care. Do you have a view if nothing happens with this bill?
Mr. Therrien: I can start and perhaps my colleague can follow.
Yes; absolutely. The position that we took two years ago was to ask insurers to self-impose a moratorium on the collection of this information because we know that it is having adverse real impacts on Canadians. You heard earlier today about some of these impacts. Some people are not taking up the offer to have these tests because they fear that it will turn against them.
At the same time, as Privacy Commissioner, I have to look at this from the perspective of the criteria found in PIPEDA, which include the question of necessity of the collection of the information for business purposes. I have to bear in mind the business purpose of the individual, the corporations at stake.
Science can change. Perhaps in the future science will be such that that which has not been demonstrated so far can be demonstrated at a later point in time, which is why we ask not for a permanent ban but for a moratorium based on the fact that there may be valid commercial reasons later to collect this information. Maybe science will be able to distinguish it so as to make it necessary and appropriate from a PIPEDA perspective. Not acting now on the basis that this is a fast-evolving area means, as you have heard from others, that real people are being affected in that they are not taking up this tremendous opportunity to be tested to find out more about their predispositions.
The Chair: This hearing is being broadcast by CPAC. Could you explain to the audience that would be listening to this conversation on this particular bill what PIPEDA means? I just got it a minute ago. Walk us through what PIPEDA is.
Mr. Therrien: PIPEDA is the federal statute governing privacy as it relates to the private sector in Canada, to be distinguished from the Privacy Act, which deals with privacy as it relates to the federal public sector.
In the current context we're talking about what are the privacy rules federally under which companies or private organizations can collect information from consumers and to what end.
Ms. Landry: I certainly share the view of my colleague. I want to add that Canada is actually the only country among the G7 not to have this kind of rule to deal with genetic discrimination. I think it is now time to do so — Canada is not in advance in this matter; we are late.
From a human rights perspective, clear language will ensure that people will have access to human rights legislation. That's really important. My colleague is the specialist in genetic discrimination. Perhaps she will want to add something.
Ms. Daye: None of us can tell the future. This issue was raised 16 years ago, in the report of Justice La Forest, in the previous review of the Canadian Human Rights Act. Back then, genetic discrimination was described as one of the key issues of the future. It is now 16 years later and we still do not have federal legislation to protect against genetic discrimination.
If this act or a similar act does not move forward, I think Canada will lose the opportunity federally to show leadership on this issue in a community of jurisdictions which is already late to the table. That's one risk.
Another risk is much more significant and really builds upon the personal stories you heard. We look at discrimination as it affects individual people, but we also pay close attention to those types of discrimination which are systemic and which permeate an entire system. The whole discussion regarding the issue of genetic testing, the use of it and the progress of science, has really been framed, medically, scientifically and technologically, in part, around industry. What is missing from this discussion is a human rights framework. We will miss the opportunity to place this ground-breaking and historical scientific development into a human rights framework that can protect equality at the same time that it promotes our progress.
The Chair: Thank you very much. Senator Andreychuk had a supplementary.
Senator Andreychuk: I am being called to another meeting, but do you take genetic discrimination in its broadest sense, or is it just the genetic testing that you do? Many people have discovered difficulties that have led to denial of insurance, but it was not because of genetic testing; it was because of medical testing that doesn't fall into the genetic analysis. This question is really directed to Mr. Therrien. Are you speaking of the broader definition of testing, or is it really when you go and get your genetic test? For years, people have been denied because of their medical record. That is, they happen to get a test and the doctor says, "Look, you have a propensity or you are likely to get,'' whether its arthritis or anything else, and the insurance companies have been able to deny people on that.
Mr. Therrien: That brings another level to the issue from a necessity for business purposes perspective. Science evolves, but there are many diseases for which genetic testing, as I understand it, will not determine the likelihood of the disease occurring. Perhaps I should ask my colleague to add here.
Ms. Kosseim: In general, it's the same framework that would apply, the same principles from a privacy perspective. Our colleagues talked about a human rights framework. We approach these from a privacy or data protection framework. The commercial organizations that seek to collect this information, whether it is personal health information, medical tests or genetic tests, still have the same thresholds that they must meet legally in order to collect it. First of foremost, it has to be reasonable and appropriate, but, second of all, it has to be necessary for the purpose for which they are seeking to collect it.
To the extent that the medical information is demonstrated to be highly correlated with the likelihood of developing a disease or a condition that will have actuarial relevance, then it will have met its conditions under PIPEDA. The reason that sets genetic test apart, particularly predictive genetic tests, is the uncertainty, from a scientific or actuarial perspective, that this will have actuarial relevance and is, therefore, not necessary at this time.
The Chair: Thank you very much. Senator Martin, you seemed to have a question. Did you?
Senator Martin: I think I've had the answers to some of the questions I had, so I'm okay. Thank you.
The Chair: We really haven't explored, except very briefly, the Canada Labour Code, and there is an amendment to this bill that states that an employee who alleges that an employer has taken action against the employee, in contravention of a subsection, may make a complaint in writing to an inspector. Have you familiarized yourself with this particular amendment? Would these amendments complement the Canadian Human Rights Act, or would you prefer that complaints in employment matters go solely to the Canadian Human Rights Commission? It seems to be that it's either complementary, or there are two ways to go about this.
Ms. Daye: We have looked at the other sections of the bill, but we have tried to keep our comments focused on proposed amendments to the Canadian Human Rights Act. What I will say is that this is a complex bill, and the provisions in the Canada Labour Code do add another possible course of action. This, in our view, is not fatal to the bill. There are other similar issues where people who believe that they wish to file a human rights complaint based on discrimination also have other courses of action, such as a complaint under the Canada Labour Code or a tort or a complaint under other mechanisms. Those options are workable. Our act has within it a provision that allows us to examine incoming complaints and to analyze whether or not the human rights issues that are raised in the complaint have been sufficiently dealt with already in another process. Our complaint has some safeguards built in to allow people to choose an option but not necessarily to repeat a complaint.
The Chair: We want to thank the four of you for appearing before us today. This is invaluable for our work and coming to a decision on this genetic testing bill. I appreciate it very much. Thank you, and this hearing is adjourned.
(The committee adjourned.)