Thank you, Mr. Chair. I will begin the presentation.
Thank you, Mr. Chair and all the members of the committee, for this opportunity to appear before you along with my friend and colleague Senator Cowan, the sponsor of the bill in the Senate.
It's funny to be sitting at this end of the table. It's a great privilege, and I'm reminded, as the chair of another committee, of what a great opportunity it is to be a witness before a parliamentary committee, so thank you.
I was very pleased and a little surprised when the House of Commons voted unanimously in favour of Bill S-201 and to send it here for further study. I did expect it to pass, but I was particularly pleased to have support from all sides and all corners of the House, including members of every party and the independents, including the Bloc Québécois and the Green Party.
The fact that it passed unanimously in the House and Senate tells me that the groups, the individuals, the patients, and the geneticists, the people in Canadian society who have been arguing for this bill and for genetic protection, have made their case and have made it well, and senators and members of Parliament have had an education in that process, so I'm not going to dwell particularly today on all the policy issues, though we can get into some of that.
I particularly chose that this bill would come to this committee for a reason. I sensed that the health committee would understand very intuitively the importance of the bill and the way medicine is changing in the 21st century, and they would get that very quickly; however, this is a bill that does pass a law. It not only amends two laws but it creates a new act, and I think this is an appropriate committee to actually get into the nature of discrimination and into the nature of the way we develop laws in this House and in this country.
I want to take a moment to thank in particular Bev Heim-Myers from the Canadian Coalition for Genetic Fairness, who has the presidency of the Huntington Society of Canada, and her team, which has brought together a wide collection of health charities and patient groups, as well as others in civil society—the CIJA, for instance—and other groups that have come together to educate Canadians and to make sure this bill is passed.
This bill is about changing the way medicine is done in Canada. Twentieth-century medicine was a view that we had on the way we were doing both diagnostic and corrective medicine. In the 21st century, with the discovery of the human genome, we have a radically new way of having medicine that is very much targeted.
For example, this past summer, the gene for metastatic fast-moving prostate cancer in men was discovered in about 80% of the cases. My father died of prostate cancer after a 20-year journey. His friend and colleague died after 18 months. For a long time, researchers have been looking at different cancers and understanding it in that way. This summer, there was a radical shift in looking at cancer and understanding that the genetic makeup of one person is different from another person; it's not necessarily the cancers that were different. This hasn't explained it completely, and there's not 100% certainty about it, but it's an inkling for further research and for changing the way that each of us will have our own health taken care of, as well as what we can do for our constituents.
I don't, however, want to overestimate the genetic factors in disease. That would, I think, also be damaging to our shared understanding of the new world of 21st century medicine. There is mounting evidence that within biology and biochemical sciences, genetics is only predictive in about 5% of chronic illnesses or disease. In fact, 90% to 95% of illnesses are shaped by our environment and by our lifestyle and other things. For us to be moving the needle too far on this is also of concern, in that we don't want to say that because someone has a genetic makeup, they are certain of getting a disease. That's just not the case. It is a marker. It is a helper for a geneticist, a physician, or a clinician, but it is not the end of the story for anyone who has that marker. Some research by opponents of this bill, I think, have not understood that and not taken that into account in their tables.
Bill S-201 has three components, each of them essential to fight discrimination, similar to the legs of a stool that has just three legs. By order of importance, they are: the Genetic Non-Discrimination Act, which would prohibit all forms of genetic discrimination, whether based on DNA or RNA; amendments to the Canada Labour Code; and amendments to the Canadian Human Rights Act. Each component is essential. None of the three components can be removed from the bill, just as we cannot take away one or two legs of a stool and still be able to sit on it.
The first leg of that stool is the creation of a new statute, the genetic non-discrimination act. This act would make it a criminal offence for a service provider or anyone entering into a contract with a person to require or compel a person to take a genetic test or to disclose the results of a genetic test.
It would also make it a criminal offence for a service provider or anyone entering into a contract with a person to collect, use, or disclose a person's genetic test results without prior consent. There would be exceptions, of course, for health care practitioners and research.
The bill sets out criminal penalties that are, I would note, strong, but they are maximum, not minimum, sentences. This is a guideline. It stresses the importance of this as a human right.
The bill states in black and white that society condemns genetic discrimination. It is not acceptable and will not be tolerated. The criminal sanctions in the bill are high in order to serve as an effective deterrent. The bill does not target any particular sector or industry. It focuses on reprehensible behaviour, which is specifically defines, and legally protects the public against it.
This new act would apply to everyone who commits a prohibited act.
The second part, the second leg of the stool, consists of changes to the Canada Labour Code. It sets up a complaint procedure for those employees who work in federally regulated industries. It's part of the change about government being a good employer.
The third, which I think is important but not as important as the first, is an amendment to the Canadian Human Rights Act, namely, the insertion of the words “genetic characteristics” into that act. Some have asked whether that alone would be sufficient, and I will argue that it would not be sufficient. I have been a member of a human rights commission. I have been a chair of a human rights commission. The onus in a human rights complaint is put on the complainant. It's on the patient, who may actually be struggling and may not have the financial resources. The act would ensure that the crown was acting on behalf of the population to ensure that we have strong deterrents to this form of discrimination, and it would make it fundamentally important for all Canadians to understand it.
You'll be hearing from groups in the insurance industry who are concerned about this. We will draw attention to the Privacy Commissioner's report that the insurance industry does not need to worry in the short or medium term. We understand that. I think we would be open to amendments at the committee if you wanted to put in some kind of a review over three years or five years, whatever is legislatively appropriate, to ensure that this won't in fact change the nature of the insurance industry.
We're of the strong belief that having the best human health information will safeguard Canadians' health, will encourage them in their lifestyle issues, in their environmental factors, and in co-determinants, to have the best health outcomes possible. In fact, we think this will help the insurance industry. People like you and me will pay our premiums for a longer period of time, and will ensure that we have the best health outcomes, and the insurance industry, like the other countries in the world that have this kind of protection, will not face an adverse reaction.
I look forward to your questions. I want to thank you for considering the bill, and also, in particular, end by thanking Senator Cowan, who is getting long in the tooth but is still eager, engaged, and really quite wonderful at this. When he started this process, there were just over 2,000 genetic tests, and in just a few years, there are now close to 38,000 genetic tests. He has shepherded this bill, brought it to different iterations, and has taken it through the Senate to get unanimous consent. He has offered it to me—I'm the custodial parent of this bill, and it's a great privilege to work with him in our adoptive procedure.
Thank you, Senator Cowan.