Justice Committee on Nov. 24th, 2016

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you.

Ms. Bensimon, I'm very interested in this. So far, we have just been looking at the constitutionality of this bill, and there have been so many legal arguments, but seeing as you hold the very interesting position of director of ethics, I'm wondering if you could inform this committee of how you approach viewing Bill S-201 from a purely ethical standpoint.

[Cécile Bensimon]

Thank you for the question. I'm very happy to answer this.

As I touched on earlier, we can say that in Canadian society the question of discrimination is recognized as a fundamentally ethical issue. Discrimination can lead to a violation of one's integrity or one's autonomy, and those are principles that we value in Canadian society. Those are principles that are integral to our health care system today.

What I can say is that if we understand genetic discrimination as being part of what constitutes discrimination, it touches on what we consider to be some of the most fundamental ethical issues in health care, which are questions of equity, of access, of equitable access, of appropriate care, and, from a public health perspective, I would even add appropriate use of scarce resources.

To summarize, this question of genetic discrimination, if we understand it to be as constituting discrimination—and I think we can all agree that discriminating against someone based on their genetic characteristics is discrimination—really touches on the most fundamental ethical issues that we value in Canadian society.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you very much for that.

Dr. Graham, you gave some very interesting testimony. If I heard you correctly, you really want this bill to come into place in its present form and not amended at all, because you see the fear that people have. You want to get rid of that fear of discrimination that people have.

Given the position you hold and the knowledge you hold, can you paint a picture for this committee of what we are on the cusp of in terms of genetic testing going forward in the 21st century and, really, what kind of potential this may hold for the future of the Canadian medical system as a whole?

[Dr. Gail Graham]

Absolutely. I think it's hard to overstate what's happening. It's a real revolution in medicine. It is something that we had hoped and anticipated would happen when all of the three billion letters in the human genomic code were put together in a draft sequence in 2000 and then finalized in 2003. We are now seeing that promise.

Genetics will become a core component of all of medicine, so that when you go to your family doctor and you're found to have hypertension, your family doctor will have a point-of-care tool that allows him or her to decide which of the dozen or so anti-hypertensive medications you are most likely to respond to, in addition to advising you to lose weight and exercise—all of those things. It will literally become part of every branch of medicine. It's what we call “pharmacogenomics”: using the variants in our genome to decide how to target medications to that person. We will no longer be taking the one-size-fits-all approach for medications, which is that if you're a male you start with this medication and then work through a series of them. We'll be able to go to medication number five right away because that's what works for you.

It really is hard to overstate how it's going to change things. We're just starting to see this infiltration of genomics into the rest of medicine. In my world of relatively rare genetic conditions, we've been using genetic tests for a couple of decades, but now we're starting to see this infiltrating into the rest of medicine, which is what we wanted, but that's why the timing is so critical. We can't afford to wait, because patients need to be able to make decisions on the basis of medicine and evidence and set aside the fear of discrimination by their employer or their insurance company.

[The Chair, Liberal, Anthony Housefather]

Thank you very much.

Ms. Khalid, you're next.

[Iqra Khalid, Liberal, Mississauga—Erin Mills, ON]

Thank you, Chair.

Thank you for coming in today and presenting some very compelling testimony.

Dr. Forbes, initially in your testimony you mentioned that Canada is the only country in the G8 that does not have some form of regulation of genetic discrimination. With this proposed legislation, we would create imprisonment as a possible penalty for those who discriminate based on genetics. Looking at international law and trying to compare where Canada would stand, I see that the U.S., Austria, Finland, and Ireland have monetary penalties. France and Israel have imprisonment as penalties. I could go on.

Have you seen effects in the international community with respect to how it impacts discrimination whether monetary penalties only are involved or whether it's imprisonment as well as monetary penalties?

[Dr. Cindy Forbes]

I'm going to let Cécile answer that.

[Cécile Bensimon]

We don't know that there's really any systematic data on this. What we do know, based on international evidence, is as Dr. Forbes said: genetic discrimination is a significant and internationally recognized phenomenon. It requires a multi-level response at the policy level and at the practice level. Legislation is also integral to that response. We would need legislation that has teeth, so to speak. I think there is international evidence for that.

[Iqra Khalid, Liberal, Mississauga—Erin Mills, ON]

Thank you.

Dr. Graham, how far behind is Canada with respect to genetics and research in genetics because we don't have laws that tackle the problem of discrimination?

[Dr. Gail Graham]

You would have heard earlier from my colleague Dr. Cohn, who has data that indicate that between 30% and 35% of individuals who would have been eligible and interested in participating in genetic research and genomics research declined to participate specifically because of this. We are risking the promise of the Human Genome Project, basically. If we can't move ahead with that kind of research, and if we can't use this information for the benefit of our patients without these concerns, we are missing out on the entire promise of that huge multi-billion dollar investment.

The answer is, we are starting to slip behind, and we will slip further behind very quickly if this worry about discrimination continues to exist for Canadians.

[Iqra Khalid, Liberal, Mississauga—Erin Mills, ON]

Thank you. Just to follow up, then, are the other G8 countries that do have these discrimination laws in place ahead with respect to their research on the Human Genome Project?

[Dr. Gail Graham]

Certainly, they have much less trouble enrolling patients in genomics-type research studies.

[Iqra Khalid, Liberal, Mississauga—Erin Mills, ON]

Ms. Bensimon, if I could come back to you, there's no definition of what “genetic characteristics” means in the legislation as proposed. What is your take on that? I was reading through the comparative law of international legislation on this. I see that many countries do define what “genetic characteristics” means with respect to applying that to potential discrimination. Can you explain why you support the lack of a definition in the bill?

[Cécile Bensimon]

Thank you for the question.

Supporting the bill without amendment does not necessarily mean that we wouldn't welcome an addition such as the defining of genetic characteristics. If that were deemed to be required, it can certainly only strengthen the bill.

[Iqra Khalid, Liberal, Mississauga—Erin Mills, ON]

Thank you.

I don't have any more questions.

[The Chair, Liberal, Anthony Housefather]

Thank you very much, Ms. Khalid.

We're now going to start our second round of questions with Mr. Hussen.

[Ahmed Hussen, Liberal, York South—Weston, ON]

Thank you, Chair.

Thank you, panel, for coming in and giving us your very useful testimony.

My question is related to the accuracy and effectiveness of the genetic markers that are used in current genetic testing. This committee heard on Tuesday from the Canadian Institute of Actuaries that the presence of certain genes within individuals is vital information for insurance companies when assessing their risks of mortality or of contracting critical illness.

Can you speak to the degree of accuracy of these tests? Upon testing positive for a certain gene, can an individual be certain or near certain that they will in fact contract the disease associated with the gene in the future?

[Dr. Gail Graham]

Thank you for that question.

There are two categories of genetic tests with respect to this question. One of them is the single gene test, such as the test for Huntington's disease, where there is a definitive test result: you either will or will not develop that disease, depending on that test result. Those are very reliable tests that we use in the context of our medical relationship with patients.

The second category, which you alluded to, are genomic variants, the little variations in each of our 20,000 or so genes that may contribute a small amount toward what we call a “complex disease”, such as heart disease. There are probably many genomic variants that contribute to the predisposition to heart disease, and that aspect of genetic testing is still very much emerging.

The best example I can give you of the unreliability of that information is that direct-to-consumer genetic test companies are using those variants to offer patients. Patients swab their mouth, send it off in a kit to a company, and get back a report about all the variants in their genome and ostensibly what their risk is of having heart disease, Parkinson's, and various other things.

If you take the same person's swab and send that to six different direct-to-consumer test companies, you will get six completely divergent results. You will get one company saying that the person is at high risk for heart disease, another saying they're at average risk, and another saying they're at low risk. This is published. There are published studies, as well this being anecdotal.

In fact, I just read a published study last night that speaks to this very issue. It is extremely dangerous for insurance companies to base their assessments of risk on this kind of data. It is not ready for prime time.

[Ahmed Hussen, Liberal, York South—Weston, ON]

Thank you.

I'd like to share the remainder of my time with Mr. McKinnon.

[Ron McKinnon, Liberal, Coquitlam—Port Coquitlam, BC]

Thank you, Chair.

Mr. Falk touched on an interesting line of questions that I would like to continue. Clause 3 states:

It is prohibited for any person to require an individual to undergo a genetic test as a condition of (a) providing goods or services to that individual;

I can see medical treatment as a service, so that makes sense to me. Also, it states:

entering into or continuing a contract or agreement with that individual;

If that kind of contract is related to the providing of treatment, that makes sense to me. As well, there is:

offering or continuing specific terms or conditions in a contract or agreement with that individual.

Again, if it were all about treatment, that would make sense to me.

However, the exclusions in clause 6 are far broader than that, in my view. I would agree with Mr. Falk on this point. If that exception were to be reduced to the aspect of providing treatment to an individual, I think I'd be okay with that. Would you like to comment on that?

[Dr. Gail Graham]

I think a rewording of that section could be entertained. Again, I don't have a legal background. One would want to protect the ability of pharmacists, for example, to prescribe and to use a point-of-care genetic test to prescribe the correct dose, for example, of the medication that the physician has requested. I think we have to be careful not to narrow that so much that we do risk interfering with medical care, but I understand the spirit of what you're suggesting.

[Ron McKinnon, Liberal, Coquitlam—Port Coquitlam, BC]

On the example of the pharmacist, that would be part of providing treatment, I should think.

I'm sorry, Dr. Forbes. Go ahead.

[Dr. Cindy Forbes]

I was going to add that when I read clause 6, it does implicate the physician, pharmacist, or other health care practitioner as providing health care services, and that the person doing the medical and scientific research is in respect of the individual who is participating in the research. There is already a professional relationship there.

I guess I'd just like to remind the committee that, in addition to the college, as physicians we abide by the Hippocratic oath, which is to do no harm. Also, of course, our college regulations would insist on all of the other principles that we practise by every day, which include confidentiality and only doing things in the best interests of the patient. I think there is a lot of protection already in existence for those relationships.

Certainly, with medical research, there are a lot of protections with ethics boards and many safeguards that protect participants. In those cases, participants sign very clear consents that they understand what the research is about and what their role is. I think there are a lot of safeguards. I don't really agree with there being a lot of concern about that.

[The Chair, Liberal, Anthony Housefather]

Thank you very much.

We're going to move to Mr. Cooper.

[Michael Cooper, Conservative, St. Albert—Edmonton, AB]

Thank you, Mr. Chair.

Thank you to the witnesses.

It's good to see you again, Dr. Forbes. I think you appeared numerous times on Bill C-14.