Speaking Notes for Senator Cowan
National Privacy and Data Governance Congress
Calgary, March 30, 2016
It is a pleasure to be here for this very important and timely Congress. I want to thank the organizers for inviting me to participate, and especially Sharon Polsky for her hard work in bringing this impressive, far-reaching program together.
The agenda covers a wide gamut of new challenges for privacy advocates, from the privacy implications of “big data”, to Internet-connected cars, to surveillance – which gives some idea of the range and size of the issues raised by science and technology today.
The issue I will address is simultaneously very small and very large. It is the privacy implications of genetic testing. Small because it relates to information stored in our genome – and to give you some perspective, the genome that each of us carries in each of the literally trillions of cells in our bodies is composed of 3 billion chemical “bases” of information. This is almost impossible to conceptualize. Here is another description: I am told you could fit 25,000 strands of DNA side-by-side in the width of a single human hair.
But despite that infinitesimal size, the issue is also very large because the quantity of information that is stored is massive. For instance, according to the United Kingdom Association for Science and Discovery Centres, if you tried typing out your own genetic code, typing at 200 letters per minute – a feat I certainly could not achieve – it would take 29 years of straight typing – no sleeping, no eating, no breaks – to complete the task.
(Don’t you wonder how people come up with those points of comparison?!)
And while just a few years ago, very little was known about our genome, medical science today is advancing at truly exponential speed in unlocking its secrets. In 2003, scientists completed what had been thought to be an impossible, science-fiction task: they mapped the entire human genome. But of course, that was just the start. For medical science, a major goal is understanding – and then treating or even preventing – diseases that have their roots in our genes. Many conditions or diseases, we are discovering, are or can be linked to certain specific genetic mutations, or combinations of genetic mutations, found in some individuals’ genome.
In 2003, when the human genome was mapped, there were some 100 genetic tests available to discover such mutations. Ten years later, when I first spoke about this issue in the Senate, that number had jumped to 2,000 – which I thought was very impressive. Today, less than three years later, there are more than 33,535 genetic tests. These relate to some 10,000 conditions and 4,752 genes.
In most cases, having a certain genetic mutation does not necessarily mean that a person will develop the associated condition or disease, only that one might. And conversely, many people who develop a condition or disease may not have the genetic mutation that science today associates with it. But knowing that one has a certain genetic predisposition can enable a person to take positive steps to actually reduce the likelihood that the condition or disease develops in the first place. This may involve simple lifestyle changes – for example, eating better and exercising more – or closer monitoring by one’s doctor, or taking certain medications, or in some extreme cases, surgery. Knowledge in this case of what is contained in your genes truly is power.
Angelina Jolie is a famous example. Several years ago, she learned that she carries the BRCA1 gene, which is associated with a higher incidence of breast cancer and ovarian cancer. She did not have cancer, but having lost her mother to the disease, she decided to undergo preventative surgery. By doing so, she reduced her chances of developing breast cancer from 87% to under 5%. She wrote in the New York Times: “I can tell my children that they don’t need to fear they will lose me to breast cancer.”
There are genetic tests for mutations associated with certain forms of prostate cancer, colon cancer, heart disease, kidney disease, ALS, cystic fibrosis, Huntington’s Disease – the list goes on and on, and it is growing, as I have said, at a truly staggering pace.
The decision whether or not to take a genetic test is, and in my opinion, should be a very personal one. There are many factors a person weighs in deciding to take a test – the medical options available if one tests positive for a particular genetic mutation, the emotional impact on one’s family members, who themselves may worry if they too carry the gene, and the emotional impact on oneself, thinking about the impact on one’s future.
The problem is that in Canada, unlike in many other Western countries around the world, a person considering having a genetic test also needs to consider the very real possibility that the test results will be accessed by third parties, such as an insurance company or an employer – and then having that information used against them. This is what has come to be called “genetic discrimination.”
Most other western nations have some kind of legal protection against this, but here in Canada, there are no laws on genetic discrimination, anywhere in the country.
I think as a matter of principle, this is wrong. Accordingly, starting in 2013 and in every Parliament since, I introduced a bill – the Genetic Non-Discrimination Act, now Bill S-201 – to provide that protection.
The bill is quite short and straightforward. It would create a new statute called, as I said, the Genetic Non-Discrimination Act. That would make it a criminal offence for service providers to require someone to take a genetic test; to require someone to disclose the results of a genetic test; or to collect, use or disclose someone’s genetic test results without that person’s prior written consent.
There are exceptions for health care practitioners with respect to persons in their care, and for medical, scientific and pharmaceutical research with respect to persons participating in that research.
The bill also would make amendments to the Canada Labour Code and to the Canadian Human Rights Act, which I would be happy to discuss if you like during the Qs and As. But the heart of the bill is the proposed new Genetic Non-Discrimination Act.
The new Act would not target specific sectors, or industries. It would target unacceptable conduct. Other jurisdictions have approached the issue on a sector-by-sector basis, and are now encountering problems because they are discovering genetic discrimination taking place in all sorts of contexts. My bill will hopefully avoid that problem, as it prohibits genetic discrimination whoever the perpetrator is, in whatever sector or industry.
The bill has been very well received by doctors, scientists, and by not-for-profit organizations across the healthcare field like the Huntington Society and the Parkinson Society – there is a long list. The Privacy Commissioner of Canada supports the bill, as does the Canadian Human Rights Commissioner. And individual Canadians have written to me, telling me of their strong support – indeed, telling me their stories and their urgent need for this kind of legislative protection from genetic discrimination.
The principal opposition to the bill is from the insurance industry and, to a lesser extent, from employers. The insurance industry believes it has the right to see all genetic test results, and a right to use that information as they see fit, whether to deny someone insurance altogether or to offer policies but only at very high – some would say exorbitant – rates.
Let me be clear, nothing in my bill would prohibit an insurance company or anyone else asking someone about their actual medical history, or even that of family members. But a genetic predisposition is quite different. A genetic predisposition simply tells you about something that may develop, sometime – perhaps decades – in the future. Or may never develop at all. And of course, having the knowledge of the genetic predisposition often then enables the person to take steps to actually reduce the likelihood that in fact the disease or condition does develop.
There is also something inherently unfair about targeting someone who happens to have one of the genetic mutations associated with a particular disease or condition, from others who may not have that mutation, but may in fact have one that predisposes to a much worse condition – but one that medical science has not yet identified. I am told by scientists that each of us has 25,000 genes in our genome. Of these, medical science has knowledge about 5,000 (and even that knowledge is imperfect). Is it fair to treat one person differently because they happen to have been born with one of the genetic mutations we know may be linked to the possible future development of a disease, but not another person who was born with a gene associated with something else, that we just haven’t discovered yet?
None of us has perfect genes. Each of us carries some genetic mutation. That is part of the human condition.
And there is something very – one might even say uniquely – private about one’s genetic makeup. As a former Privacy Commissioner of Canada once said, “When it comes to personal information, it doesn’t get more personal than your DNA.”
In preparing my notes for this conference, I took a few minutes to look at the history of privacy law. The saying that one’s home is one’s castle goes back at least as early as 1499, and found judicial expression in the 1604 Semayne’s Case, where the court held that “the house of every one is to him as his castle and fortress.”
So we readily protect the inviolability of the bricks-and-mortar homes where we live – yet 500 years after Semayne’s Law, we still have to fight for the right to protect our privacy to our flesh-and-blood-and-DNA “homes” – our bodies – in which we live.
Genetic discrimination is very real, and it is happening every day, here in Canada. There are many stories – it seems that every time I speak about my bill, someone takes me aside, and tells me their own story. Let me share with you an email I received just recently from a young woman. For obvious reasons, I won’t reveal her name, but she has agreed that I may share her story. Here is what she wrote to me:
“My mother, now facing cancer for the third time in her life, recently tested positive for the BRCA1 genetic mutation. I had already been approved for life insurance when she received her test results and immediately chose to undergo testing myself. I moved quickly as I am expecting my second child any day now. Unfortunately, when I mentioned this to my insurance broker, he insisted on informing the insurance company that had approved my coverage, arguing that the policy had not yet been delivered and therefore was not in force. You can probably guess what happened next. The insurance company indicated it would not deliver the policy until it saw the results of the testing and would reserve the right to adjust its offer. I chose to cancel my application. Although I have yet to receive the results, as you can imagine, I am very nervous. If I test positive, I worry I will not be able to secure affordable life insurance to protect my family just when I would need it the most. Hopefully, my test will be negative and this will prove a non-issue for me personally, but my heart aches for the many Canadians who must find themselves in similar situations and the dire consequences and difficult choices they would be faced with.”
That is a recent example of genetic discrimination by an insurer. Another story concerns a young man, 24 years old, who was working at his first job in his chosen field. He has family members who tested positive for the Huntington’s gene. Huntington’s is a terrible disease. It is one of the few where if you have the gene, you will develop the disease. However the disease usually does not begin to develop until middle age or later. Indeed, some people die of other causes before ever developing the disease. And there are on-going clinical trials of treatments to delay the onset of Huntington’s even later.
This young man took the agonizing decision to get himself tested. He shared with his employer that he was going to do this. On a Friday, he found out that he had tested positive; he has the Huntington’s gene. His employer asked what the results were, and the young man answered honestly. That was, as I said, on a Friday. On the Monday, the young man was fired. He was a video editor. The employer said he was afraid for his equipment.
He is 24 years old. He is unlikely to develop the disease or show any symptoms for decades. But now he has been fired. What does he do? When he applies for another job, how does he explain being fired? If he tells the truth, will he risk being fired again?
Huntington’s is, as I say, a terrible disease when it develops. But genetic discrimination takes a disease and magnifies its power, so that it casts its dark shadow over the years when one is healthy and disease-free.
Fear of genetic discrimination is having the result that many Canadians are reluctantly deciding not to have genetic testing for themselves or their children – testing that their doctors strongly believe could help in their health care. Dr. Ronald Cohn is a medical geneticist at SickKids Hospital in Toronto. He has too many heartbreaking stories of families who desperately want genetic testing to help point the way to a diagnosis and treatment for their very sick child. But many feel compelled to make the terrible choice not to consent to the test, for fear of genetic discrimination. Without the testing, Dr Cohn cannot properly treat these very sick children. In his words: “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.”
As I said at the beginning of these remarks, there are many reasons why a person may choose not to have genetic testing. But fear of genetic discrimination simply should not be one those reasons.
I am optimistic that Bill S-201 will pass the Senate in the next few weeks. At that point, it will move for consideration to the House of Commons. We still have a long way to go, but I am hopeful that we will finally see legal protection for what should be a fundamental component of our right to personal privacy.
In my view, an individual’s right to control access to their DNA, to the building blocks of their very being, is a fundamental privacy right, and is a prime example of science and technology raising new challenges for privacy rights. Undoubtedly there will be more. But now I look forward to hearing your views, and any questions you may have, on genetic testing and privacy, and to learning about other issues over the course of the next three days.