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

11:25 a.m.

Liberal

The Chair Liberal Anthony Housefather

Thank you very much.

We're going to Mr. Fraser.

11:25 a.m.

Liberal

Colin Fraser Liberal West Nova, NS

Thank you, Mr. Chair.

Thank you very much for being here today and for your excellent testimony. It's much appreciated.

Some of what has been mentioned today is the anecdotal sort of evidence. I'm wondering if you have any information about statistics or even about looking to other jurisdictions with regard to the numbers of people who would take advantage of genetic testing but who don't now because of the fear of discrimination.

11:25 a.m.

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

Yes. I think the best data is evidence that has already been presented to this committee both by Dr. Cohn from SickKids and by Dr. Yvonne Bombard, who has done research in this area. I'd make reference to both their testimonies.

11:25 a.m.

Liberal

Colin Fraser Liberal West Nova, NS

Thank you.

Dr. Forbes, from the Canadian Medical Association's point of view, do you know of any work being done in the provinces on this? I know that reference was made to Bill 30 in Ontario, but is there other work being done in the provinces that you feel is helpful but not quite getting to the point where we would have a national overarching framework for the country? Why do you feel that it would be important to have this done nationally rather than province by province?

11:25 a.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

I'm not aware of work being done at other provincial levels, other than what's already been presented. I think that from speaking with physicians, we know, from our day-to-day work, that it is a real problem. It's not easily measured, if you can imagine the nature of it, of patients.... We're really talking about very personal health care decisions that may or may not even come to our attention.

11:25 a.m.

Cécile Bensimon Director, Ethics, Canadian Medical Association

What I can add is that we feel it's very important to have national standards because, as we know, if we leave it to provincial regulation we can end up with a patchwork of regulations. That's not consistent with the spirit of the Canada Health Act, which wants to guarantee portability and, for example, access to care.

There are many reasons why there should be national standards. One of them is the question of access, as well as protections for Canadians. One thing I can say in my capacity as an ethicist is that genetic discrimination is fundamentally an ethical issue. We know that discrimination is addressed at a federal level, because we need that consistency and uniformity across the country.

11:30 a.m.

Liberal

Colin Fraser Liberal West Nova, NS

Thank you for that.

When Professor Hogg was here on Tuesday, he talked about the legislative agendas in each province as well and the fact that having an ability to put into place a national overarching framework for this would be useful, because each province may have different priorities and it may take time to get it uniform across the country. Would you agree with that statement?

11:30 a.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

Absolutely.

11:30 a.m.

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

Yes, absolutely.

11:30 a.m.

Liberal

Colin Fraser Liberal West Nova, NS

Thank you.

With regard to the constitutionality of it, does either of your organizations have an opinion on that? Can you shed any light with regard to it being more properly addressed through provincial legislation?

11:30 a.m.

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

Not being lawyers and not being constitutional lawyers, we're at a disadvantage, but I've spoken to the senator and I've also read the testimony from the very esteemed lawyers who presented to this committee. Our organization has no concerns whatsoever about the constitutionality of this legislation.

11:30 a.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

I would agree with that.

11:30 a.m.

Liberal

Colin Fraser Liberal West Nova, NS

You mentioned, Dr. Graham, the colleges of physicians and surgeons, which in one form or another exists in every jurisdiction in the country. Have they expressed to either organization any challenges or problems with regard to encroaching on provincial jurisdiction?

11:30 a.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

No, they have not.

11:30 a.m.

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

No, not to us.

11:30 a.m.

Liberal

Colin Fraser Liberal West Nova, NS

All right.

Do I have more time?

11:30 a.m.

Liberal

The Chair Liberal Anthony Housefather

You have one minute.

11:30 a.m.

Liberal

Colin Fraser Liberal West Nova, NS

With regard to supporting early diagnosis, which you mentioned, Dr. Forbes, can you give some indication as to how this bill would encourage people to get the genetic testing and how that would support an early diagnosis and would help them make medical choices for themselves?

11:30 a.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

Absolutely. I think the example I gave was one that would illustrate that point. The conversation that we have at the primary care level is often very introductory, recognizing that there are pros and cons to genetic testing, and one of the obvious negatives is insurability.

If we can take that out of the equation and that's no longer part of the conversation, then we're looking at purely the medical issues and no longer at the societal issues that may involve employment, or insurance, or repercussions that will follow for generations. Then we're really looking at what is best for the health care of that patient. It really narrows it down. It makes it that much more simple, and even though those are complex discussions, it removes that fear.

11:30 a.m.

Liberal

Colin Fraser Liberal West Nova, NS

Very good.

11:30 a.m.

Past-President, Canadian College of Medical Geneticists

Dr. Gail Graham

If I may, I could offer an example. The inherited arrhythmias, such as long QT syndrome, are a good example. Let's say one's parent has the condition. Then one is at a 50% risk to have it. A genetic test can say yes or no as to whether that person has a predisposition to potentially life-threatening arrhythmia that can be treated with anti-arrhythmic medication and sometimes an implantable defibrillator.

If somebody refuses to have that genetic test simply because they're afraid of employment or insurance discrimination, they forgo that treatment. They don't discover whether they need that defibrillator. It makes a very real difference.

11:30 a.m.

Liberal

Colin Fraser Liberal West Nova, NS

Thank you so much.

11:30 a.m.

Liberal

The Chair Liberal Anthony Housefather

Thank you.

Mr. MacGregor.

November 24th, 2016 / 11:30 a.m.

NDP

Alistair MacGregor NDP Cowichan—Malahat—Langford, BC

Thank you very much, Mr. Chair.

Thank you to the witnesses for appearing today.

It's good to see you again, Dr. Forbes. I remember our meeting earlier in the year.

As you've correctly referenced, we've had some very illuminating testimony on this bill from constitutional experts. The government feels that this particular bill is going to be imposing federal jurisdiction in an area of traditional provincial jurisdiction, in contracts and services; however, that view has been counteracted by none other than Professor Hogg. Professor Hogg is probably the most-referenced constitutional scholar in Canada, and I think that when he speaks, he speaks with a certain amount of authority. It is clearly within his view that the constitutionality of this bill falls strictly within federal criminal law power. He feels it's a valid exercise.

However, to be fair, I do want to read out to you some of the opposing legal arguments that have come from the Torys law firm, which was hired for the insurance industry. They feel that courts have relied on the criminal law power to uphold a variety of federal statutes on the basis of a “public health evil”. In each of the cases, the criminal law power has been directed at human conduct that has “an injurious or undesirable effect on the health of members of the public”. Their conclusion is that they feel that the first clauses of Bill S-201 do not address a public health evil.

Dr. Forbes, I'd like to get your response to that.

11:35 a.m.

Past-President, Canadian Medical Association

Dr. Cindy Forbes

Obviously, I would disagree with that. It is a public health issue. It is a health care issue. I think it's a very personal issue for everyone; I think that was well said, you know, if you think about it for yourself.

I see it as a national issue. Each of us has a genetic code. It is universal. As for how we deal with that, I think we need to do it as a nation. Also, there's the issue of portability of health care and universality. If you had testing done in one province under the opinion that it was safe and that you would be safe from discrimination, and you then reside in another province where you have to reveal that, or where it's suggested that you have to take a test to be insured, then you're playing under two different sets of rules.

I think that as Canadians we value our Canadian health care system. I think this is a really good example of an issue where federal legislation will serve everyone well.