Evidence of meeting #34 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 senate.

A video is available from Parliament.

On the agenda

MPs speaking

Also speaking

James S. Cowan  Senator, Lib., Senate
Marie-Claude Landry  Chief Commissioner, Canadian Human Rights Commission
Marcella Daye  Senior Policy Advisor, Human Rights Promotion Branch, Canadian Human Rights Commission
Fiona Keith  Counsel, Human Rights Protection Branch, Canadian Human Rights Commission

12:40 p.m.

Senator, Lib., Senate

James S. Cowan

Thank you, that's an excellent question. Where do I begin?

At the root of it, I think that's the motivation behind this, because we see this genetic testing as key to the personalized medicine or precision medicine that is recognized by health care professionals as the future of medical care.

Let's put it this way, when you go to your doctor and you are diagnosed with a condition or an illness, then the doctor will prescribe a medication that is for the average person. That happens to be the average male with that condition, because that's the way they test it, whereas if the medical professional were to have access to your precise genetic information, then the doctor prescribing could know which medications are most likely to succeed and just as importantly which medications are almost sure to fail.

Here's a startling statistic that I heard a couple of weeks ago in Vancouver. I am told that there are between 10,000 and 20,000 Canadians who die every year because of adverse drug reactions. That's an astounding figure. What happens is that many people are prescribed drugs based upon the general information, and they react adversely.

There's a syndrome called the long QT syndrome. It's a mutation that appears in the general population, in one in 2,500.

12:40 p.m.

Conservative

Ted Falk Conservative Provencher, MB

Can I thank you for that and ask you another question, which I also want to get in?

12:40 p.m.

Senator, Lib., Senate

James S. Cowan

May I add one thing?

12:40 p.m.

Conservative

Ted Falk Conservative Provencher, MB

You can add just one thing.

12:40 p.m.

Senator, Lib., Senate

James S. Cowan

I'll provide the information to you.

12:40 p.m.

Conservative

Ted Falk Conservative Provencher, MB

When I go to purchase insurance these days, they do a variety of medical tests on me. They do an EKG and they do a blood sample. What would be the difference, in your mind, between that and a genetic test affecting their risk rating?

12:40 p.m.

Senator, Lib., Senate

James S. Cowan

From the point of view of public policy, where I would draw the line is the point at which the insurance companies have access to information about your current situation. They ask you about your historical medical information. They ask you about your current information; what hospitalizations you've had, what drugs are you taking now, whether you drink or smoke, they weigh you, they do all those kinds of things.

The difference between that and the results of genetic testing is that those results indicate, to a greater or lesser extent and with greater or lesser accuracy, what might happen in the future. As public policy-makers, I think if we are to draw a line between what is reasonable to provide to somebody who is assessing risk and what is across the line, I think the proper place is there.

12:40 p.m.

Conservative

Ted Falk Conservative Provencher, MB

I'm not entirely disagreeing with you, but I'm subjected to blood tests, and EKGs, and chest compression dimensions. These are all kinds of things already that help them rate my risks under these current conditions. They check my pulse, and my blood pressure, and all these kinds of things. I'm just wondering why you see that as being significantly different from doing a genetic test.

12:45 p.m.

Senator, Lib., Senate

James S. Cowan

I think the difference is that what that blood test will give you is an indication as to your current situation. Are there elements that are out of whack in your blood count? I'm really going beyond my ken here, but they'll assess your current state and they also have access to what's happened in the past. A genetic test is a predictor, with a greater or lesser accuracy, about what might happen in the future. That's the difference.

12:45 p.m.

Liberal

Rob Oliphant Liberal Don Valley West, ON

I really want to emphasize that part. Because of the predictive nature— When the insurance industry was opposing this, some of the actuarial studies that were done did not take into account behavioural changes that could improve a person's health if they had the genetic test.

12:45 p.m.

Conservative

Ted Falk Conservative Provencher, MB

Sure.

12:45 p.m.

Liberal

Rob Oliphant Liberal Don Valley West, ON

I was a pastor for 25 years. One of my jobs was to encourage people to go to the doctor, because they didn't want to get bad news. I was saying that we need to lower the barrier that is a human instinct to avoid getting bad news. That's what we all have at a base level. If we also have a potential discrimination in another way, like you can't get a job, it's another thing.

12:45 p.m.

Liberal

The Chair Liberal Anthony Housefather

Go ahead, Mr. Falk.

12:45 p.m.

Conservative

Ted Falk Conservative Provencher, MB

Thank you very much, Mr. Chair, and I recognize you're extending me some grace here.

Madam Landry, thank you for coming. Thank you for your testimony. Have there been any current complaints about discrimination based on genetic testing?

12:45 p.m.

Chief Commissioner, Canadian Human Rights Commission

Marie-Claude Landry

Sorry, can you repeat that?

12:45 p.m.

Conservative

Ted Falk Conservative Provencher, MB

I can't talk French, but I'll talk slower.

Are there any current complaints made to the Canadian Human Rights Commission on genetic discrimination? Have you had any cases?

12:45 p.m.

Chief Commissioner, Canadian Human Rights Commission

Marie-Claude Landry

As I mentioned in my speech, in fact, people can complain about the situation if it's linked to something else as a disability. We have around 20 file inquiries or complaints about genetic discrimination, but they are related to something else also; disability, race, or—

12:45 p.m.

Liberal

The Chair Liberal Anthony Housefather

I think what Mr. Falk is asking is this. Have you had to reject complaints because they didn't tie to another prohibited ground?

12:45 p.m.

Chief Commissioner, Canadian Human Rights Commission

Marie-Claude Landry

If it didn't relate to another ground, for sure.

12:45 p.m.

Conservative

Ted Falk Conservative Provencher, MB

You can answer in French, if it helps.

12:45 p.m.

Liberal

The Chair Liberal Anthony Housefather

Have you had ones you've had to throw out? That's what he's saying. They've come to you, but you said you can't deal with it because.... That's what he's trying to ask you.

12:45 p.m.

Chief Commissioner, Canadian Human Rights Commission

Marie-Claude Landry

The answer is yes. If it doesn't link to something else, such as disability or race, yes.

12:45 p.m.

Conservative

Ted Falk Conservative Provencher, MB

And it has happened?

12:45 p.m.

A voice

Yes.

12:45 p.m.

Liberal

The Chair Liberal Anthony Housefather

Merci beaucoup.

Now we're going to go to Ms. Khalid.