Justice Committee on Nov. 17th, 2016

[The Chair, Liberal, Anthony Housefather]

You have 20 seconds.

[Colin Fraser, Liberal, West Nova, NS]

Okay. That's fine. I'll leave it there.

Thank you.

[The Chair, Liberal, Anthony Housefather]

Thank you very much.

Maybe Mr. MacGregor will ask your question.

Mr. MacGregor.

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

I hope I can do it.

Thank you, Mr. Chair.

Mr. Marceau, I'll start with you. I'm going to read you a quote from the minister's brief here. She states, “...the scope of the criminal law power should not be extended in ways that potentially undermine the constitutional division of powers.” Then she goes on to say, of course, “The regulation of contracts and the provision of goods and services are subject matters that ordinarily fall within provincial legislative jurisdiction.”

Is it your opinion that the criminal law power expressed within Bill S-201 fits within the constitutional jurisdiction of the federal government? Just looking at the minister's statement, are you in disagreement with her? Do you feel that what we're doing here with this bill should go ahead unamended and as is?

[Richard Marceau]

It is my professional opinion that Bill S-201 would stand a constitutional test based on the division of power, and I agree with your colleague, former minister Nicholson, who said earlier that the creation of such a criminal offence falls squarely within federal jurisdiction.

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

Perfect.

I'll turn to you, Ms. Heim-Myers. You were talking about a patchwork quilt, and that was one of your greatest fears because, of course, Canada is a federation of 10 provinces and three territories. When I think about patchwork quilts, I look at existing federal statutes, such as the Canada Health Act. That is the federal government using its power of the purse to make sure that all of our provincial systems, if they want to have the federal health transfer, conform to public administration, universality, and portability to try to eliminate that patchwork quilt context.

I was wondering if you could go into a bit more detail about your fears with this bill. If we were to rip out some of the guts of it, how might that lead to a patchwork quilt situation across the country?

[Bev Heim-Myers]

If we don't have the overriding legislation and deterrent to genetic discrimination, then we will move forward with the provinces, and it will be similar to what has happened in the States. In the U.S., they have GINA, but that doesn't cover life insurance or disability insurance, and 24 states have subsequently implemented legislation but different legislation. If you go from California to a different state, then the legislation would be very different. You don't know what your protection is.

One of the dangers of that is that we want to do clinical trials in Canada, specifically for Huntington disease. We are very close to a treatment for Huntington disease. It's a devastating disease, but we need people to participate in clinical trials so they can move forward and potentially get drugs to save their lives and the lives of generations to come.

If they participate in a clinical trial in Ontario, and Ontario is protecting genetic test information, and if Ontario chooses to put legislation through beyond that by adding to the Human Rights Act, but then they go to B.C. to continue in clinical trials, they won't have protection. That is detrimental to the individual, detrimental to science, and detrimental to clinical trials happening in Canada.

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

So you would agree that pursuing this law is very much in the public good and the public interest, and that it overwhelmingly goes above and beyond any perceived private interests that may conflict. By eliminating that fear of discrimination, we're encouraging people to really take hold of their own health choices and to find out what markers they may have, so that they can maybe take some steps not only to save their own lives down the line and lead healthier lives but also to save the health care system potentially millions of dollars down the road.

[Bev Heim-Myers]

Absolutely.

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

I'm going to just read a quick quote, and I'd like to have all of you respond. On Tuesday, we had the sponsors of the bill here. Mr. Oliphant stated, and I quote here:

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—

and that's Bill S-201

—ensure that the crown is 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....

Ms. Gibbons, starting with you, I'd like to hear comments from all of you on that specific quote, whether you agree with it, and so on.

[Clare Gibbons]

Absolutely, I would agree with that quote. It is hard for an individual to be the one to come forward and to say they have experienced genetic discrimination, and it's important that there be some protection for these people in that case. Right now, when we hear about these cases of genetic discrimination, there's not much we can do. We feel powerless at this point when we have given patients test results and they come back to us a year later or call us a year later to tell us about something that has happened. In some cases, we've tried writing letters and doing things to advocate on their behalf, but we feel that we just don't have a lot of power to help these people.

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

I have 30 seconds left, so I want to quickly hear from all of you, just to get it on the record.

[Bev Heim-Myers]

I absolutely agree, and time is of the essence, because genetic information is quadrupling as we speak. Thirteen years ago, 100 genetic diseases had been identified. Now there are over 6,000, and there are over 33,000 genetic tests. This is going very quickly.

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

Thank you.

Mr. Shack.

[Noah Shack]

I would echo what my colleagues have said here already, and just add that the criminal provision is even more important, given the wide variance in priority that different provinces put on this. We discovered in our consultations that there's a wide degree of variance in how quickly people really want to move forward with this and prioritize it. Ontario is moving, but....

[Richard Marceau]

I want the sword hanging over the head to be as heavy as possible, so that if you do discriminate, then you know a heavy sword will fall on your head.

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

Thank you.

[The Chair, Liberal, Anthony Housefather]

Thank you very much.

Mr. Bittle.

[Chris Bittle, Liberal, St. Catharines, ON]

Thank you.

Mr. MacGregor touched on this very briefly and I wonder if the witnesses could expand on it. We heard testimony that healthier people lead to lower insurance rates.

Can each of you comment a bit on what effect that will have on the public health care dollars that we spend?

[Clare Gibbons]

In particular, in the area of the genetic testing, where you can screen to try to optimize healthy people, we do feel that knowledge will improve that. Even for people who have a medical condition and who choose not to be tested, such as the person with the colon cancer, having them develop stomach cancer or liver cancer or their relatives developing stomach or liver cancer puts a much bigger burden on the health care system than going ahead with genetic testing would have, let alone the social impact of a person perhaps passing away because of this fear.

[Bev Heim-Myers]

I'll give you an example. Two brothers in a family in their early twenties have long QT syndrome, a genetic heart disease, which means they could die very young from a heart attack. One brother is job hunting and the other brother isn't. One is tested for long QT and knows it is in his family. He has the gene, and he'll be on beta blockers for the rest of his life, and he'll be fine. The other brother decides not to get tested, because he's job hunting, and he doesn't want anybody to find out that this is in his family. Who wins when he's 35 years old and dies, leaving a family behind, when it could have been managed his whole life? Prevention is huge in saving health care dollars, but it's really about saving lives.

[Noah Shack]

I believe that genetic predisposition is the number two determinant of health, after lifestyle. Just touching on the long QT example, recent studies have indicated that the incidence of long QT syndrome is 20 times higher in certain first nations communities in northern British Columbia, and the specific genetic markers for long QT are linked to type 2 diabetes, which is, of course, a major health concern in first nation communities.

When we're talking about this, it could have significant public health benefits across Canada.

[Chris Bittle, Liberal, St. Catharines, ON]

I'd like to flip back to the employment side of the argument. I've heard some examples, and perhaps you can help me understand things. If an individual receives a result from a genetic test, then it's personal and private information, so why is there a concern that a potential employer might find out? Under what circumstances are employers finding out about this?

[Bev Heim-Myers]

I would say there are fewer examples with employers at this time, but employers now in Canada are looking to add genetic testing to their benefits packages. I had a call from a human resources individual asking me how they can teach their employers to understand genetic information for the benefit of the company. How can they take this information and use it? They're putting it in their benefits packages as something that might benefit the individual, but where is this going? I don't think we even know where this is going.

There are doctors who will be testifying here, and their life's work is better understanding the human genome. An employer is not going to learn about that in a very short period of time. The information does not belong in the hands of people who are going to misread the information or not understand multifactorial diseases that may or may not manifest, let alone make life-changing decisions based on it. They're wanting to do that now.

[Richard Marceau]

I have nothing to add.