Evidence of meeting #37 for Justice and Human Rights in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was patients.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Cindy Forbes  Past-President, Canadian Medical Association
Gail Graham  Past-President, Canadian College of Medical Geneticists
Cécile Bensimon  Director, Ethics, Canadian Medical Association

11:50 a.m.

Past-President, Canadian Medical Association

11:50 a.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

I want to begin by looking at clause 5 of the bill, which prohibits collection, use, or disclosure without the written consent of the patient. That makes sense, in my opinion. There's nothing wrong with that clause, but I think it's a fact that when an individual undertakes genetic testing, for example, it may show that he or she has a predisposition to a disease or something, and as a result of that predisposition, it may also demonstrate that family members have a similar predisposition. It could be argued that, to some degree, the clause doesn't go far enough to protect other persons who might in some way be impacted as a result of an individual giving their consent.

Do any of the witnesses have any thoughts on that? Is it a concern? Is there something that perhaps should be considered in the way of an amendment to the legislation? Or are you satisfied that it's good as it is?

11:55 a.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

Certainly, under the patient-physician relationship and confidentiality, we would be bound not to disclose that information without the patient's consent, regardless of whether other family members may have that gene.

These situations are sensitive and complex, and involve conversations with our patients about the implications, and whether they wish to disclose that information to other family members. Again, I'll pass that over to our genetics specialists, because I would be relying on them as well to have those conversations.

11:55 a.m.

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

Yes, that's very much a part of what we do. When we're discussing a predictive test with a patient—I'll use Huntington’s disease as an example—we discuss not only the implications for that person of a positive or negative test result, but depending on the family structure and how they are connected to an affected member of their family, we discuss what their test result will and won't tell them about other family members.

We discuss if and how they would disclose their test result to other family members. All of that is called “genetic counselling”. It's very much a part of the contract that I have with my patients. As Dr. Forbes said, if a patient tells me that they want their test result to be kept confidential, then I must respect that.

11:55 a.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

Thank you for that.

I want to turn to a different issue, and in particular the Torys opinion. I don't know if any of you have had an opportunity to review it. I certainly am not necessarily endorsing the legal analysis, but it's their argument that, in order for Parliament to properly exercise its criminal law power in matters relating to health, there must be a public health care “evil” or a health care “evil”, and that's right. That's accurate. They try to distinguish the underlying purpose of Bill S-201 as not combatting a “public health evil”, but rather promoting “beneficial” medical health practices.

I know you have alluded to the different negatives or consequences of someone forgoing genetic testing, but maybe you could put on the record what it might mean for the health of an individual who, for whatever reason—because of fear of discrimination—decides that they don't want to undertake a genetic test. What might that mean for that patient's health?

11:55 a.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

I think a couple of things are involved in what you're saying. We have the broader issue for the whole system of public health, and then the issues for the individual.

Specifically for the individual, it may mean they will not avail themselves of what would be the best medical care available to them, given their condition. They may not be offered treatment such as something radical like surgery or something very invasive, because it wouldn't be justified without a positive test. They may not be offered the appropriate treatment. As mentioned, when we start to see the pharmacology based on the genetic code of an individual, that will not be available to patients as that becomes more common. They may have a delayed or absent diagnosis. They may never actually get diagnosed with their underlying condition, because they have not had the testing that would show that. By not availing themselves of the best treatment, they may have increased mortality and morbidity, so they may die younger. They may be more ill. There may be other consequences for the health care system in a delayed diagnosis.

I have a colleague who actually has a family history. Her father is from a family of 10 in Prince Edward Island. All 10 developed early-onset dementia: 10 out of 10. The gene has been identified. She is not willing to go into clinical trials. Actually, there are none here, but in the States there are clinical trials for treating patients like her before they develop symptoms. But she's not willing to be tested because of concerns about insurability. It brings up another public health issue of patients not willing to become part of research projects. There is no benefit to her at this point without any proven treatment. There is only the downside of the insurability issue. That's a broader issue of not having people entered in clinical trials because they are not willing to take that risk.

I think I've outlined quite a few of the issues that patients would really would be facing.

Noon

Liberal

The Chair Liberal Anthony Housefather

Thank you.

Because of time, I'm going to Mr. Bittle.

Noon

Liberal

Chris Bittle Liberal St. Catharines, ON

Thank you so much.

I only have one question. If it's all right with the chair and the committee, I'll be splitting my time with Mr. Casey.

We heard from the insurance industry at the last meeting. They proposed what in my mind is half-baked, because they haven't really come up with the details yet. They would prefer to self-regulate genetic discrimination. They promised to announce the details sometime soon, maybe, but I was wondering if you could comment and give us your thoughts on self-regulation by the insurance industry.

Noon

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

Well, for insurance companies, their duty is to their shareholders. My duty as a doctor is to my patients. You've heard multiple examples today, and previously as well, of the way in which this issue interferes in patient care and how it can cost the health care system more money because people don't want to have the test that shows they don't need the extra surveillance. I think this is far, far too important to be put into the hands of the insurance industry for them to undertake some kind of voluntary moratorium....

Noon

Past-President, Canadian Medical Association

Dr. Cindy Forbes

I would simply agree with that.

Noon

Liberal

The Chair Liberal Anthony Housefather

Does anyone have any objection to Mr. Casey taking the rest of Mr. Bittle's time?

Mr. Casey, you're on.

Noon

Liberal

Sean Casey Liberal Charlottetown, PE

Thank you, Mr. Chair and colleagues.

My first question is for Dr. Graham. We heard what I thought was some pretty compelling testimony on Tuesday from the Institute of Actuaries. They talked about a situation in which a patient has an EKG that indicates a diagnosis and where there could be a genetic test that could result in the provision of the same information. One needs to be disclosed. The other doesn't.

That brings me to the whole question of the nature of the genetic information, in that certain information is for diagnostic purposes, certain information is for predictive purposes, and certain information is for research. Bill S-201 does not differentiate between any of the proposed purposes, but in England, for example, they do.

I'd be interested in your perspective on the value of differentiating within the legislation the purposes for which the genetic information is being used and adopting or tailoring rules around its disclosure based on its use.

Noon

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

It's an excellent question.

The dilemma, really, is that many of the genetic tests that we discuss with patients are predictive tests. Take the example of Huntington's and someone at the age of 20 who has a test for Huntington's that shows they will get the condition, probably in their forties or fifties. That's going to happen. That's certain information. Take the example of someone who has a cholesterol test as part of their annual physical with their doctor and gets as a result a risk for heart disease, that is a risk that can be influenced by a whole bunch of other things. It can be influenced by what the patient does between then and 10 years from then.

I think the distinction we need to make is not so much how the test is being used. I think that we have to protect all genetic information regardless of in what context it came to light. Because the concern is still there: regardless of whether it was a diagnostic test or a predictive test, that person is still subject to discrimination.

12:05 p.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

I want to take a bit of a different tack on that. I think there's a danger in breaking this down into categories. It would not ameliorate the issue of the fear of discrimination. It would not be clear to the general public, to most people, that some of the information could be used and some of it wouldn't be used. I think the message would still be that it's not safe. There wouldn't be certainty as to which information would end up going to the insurance company legitimately and which wouldn't. I think we should avoid confusion. For that reason, I would say that it should be all genetic information, in addition to what you've mentioned.

12:05 p.m.

Liberal

The Chair Liberal Anthony Housefather

You have time for one more small question.

12:05 p.m.

Liberal

Sean Casey Liberal Charlottetown, PE

Thank you.

There's a perception out there that if insurance companies get their hands on someone's genetic information, they're going to be ineligible for insurance. If it became broadly known that you will always have the right to withhold genetic information if the value of your insurance policy is, let's say, under $250,000, or if you're to be part of a group insurance plan, and if that were widely known in the medical community and widely shared with their patients, would that have an impact?

12:05 p.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

I think that if it were clearly understood, if I understood you correctly, it would not impact your risk of insurance. Is that what you just said?

12:05 p.m.

Liberal

Sean Casey Liberal Charlottetown, PE

The proposal, as I understand it, whether it be by self-regulation or by government regulation, is that genetic testing would not be required to be disclosed for any policies under $250,000. It's only for big insurance that it's relevant.

12:05 p.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

I honestly don't think that would change anything. I think it would be the same issue.

Also, not everyone knows at what point in their life they're going to be considered for a policy of any value. If you're having the testing done when you're 18, you're not even thinking about insurance. You really don't know what the repercussions could be later on when you're actually someone who needs to apply for a much larger amount.

I don't think it would change people's concept of the risk of discrimination.

Do you have any thoughts on that, Gail?

12:05 p.m.

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

No, I agree completely. It wouldn't change anything.

12:05 p.m.

Liberal

The Chair Liberal Anthony Housefather

Thank you very much.

Mr. MacGregor.

November 24th, 2016 / 12:05 p.m.

NDP

Alistair MacGregor NDP Cowichan—Malahat—Langford, BC

Thank you. I have just a couple of minutes, I guess?

12:05 p.m.

Liberal

The Chair Liberal Anthony Housefather

Yes. Take what you need.

12:05 p.m.

NDP

Alistair MacGregor NDP Cowichan—Malahat—Langford, BC

Your answers to my previous questions were certainly very illuminating for me and, I think, for this committee. If I had to ask one more question, I would like to get a response from each of you in turn in terms of comparing what your thoughts are on previous testimony that we've heard.

One of our first witnesses came from the Canadian Human Rights Commission. The last section of this bill deals with amendments to the Canadian Human Rights Act, and that witness felt that the change by itself would not be enough and that criminal sanctions are definitely needed to prevent genetic discrimination.

Just to get it on the record, do you agree with that statement? That's for the three of you.

12:05 p.m.

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

Thank you.

I wholeheartedly agree with that statement. I believe that the amendment to the Human Rights Act is important and that it should enshrine these values as Canadian values, but by itself it will absolutely not be sufficient to protect patients. It won't give them a recourse in terms of employment or insurance discrimination.