Evidence of meeting #35 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 testing.

A recording is available from Parliament.

On the agenda

MPs speaking

Also speaking

Laurie Sargent  Deputy Director General and General Counsel, Human Rights Law Sector, Public Law and Legislative Services Sector, Department of Justice
Laurie Wright  Assistant Deputy Minister, Department of Justice
Bev Heim-Myers  Chair, Canadian Coalition for Genetic Fairness
Richard Marceau  General Counsel and Senior Government Advisor, Centre for Israel and Jewish Affairs
Noah Shack  Director of Policy, Centre for Israel and Jewish Affairs
Clare Gibbons  Genetic Counsellor and Past President, Canadian Association of Genetic Counsellors

12:30 p.m.

Chair, Canadian Coalition for Genetic Fairness

Bev Heim-Myers

Do you want me to start?

I'm not a lawyer, so I'll put that on the table.

I think it's critically important to change the Canadian Human Rights Act. We've worked with Justice since 2010, and they've been very onside with making the Canadian Human Rights Act more explicit, so that there is no question and no grey area. That's very important, because that will filter down to the provinces, and provinces will take a lead and do that.

That's not the only important part of this bill. It's very important to have pan-Canada protection. It's very important that we don't have a patchwork. The issue with a patchwork approach, where at a pan-Canada level we don't have the same protection right across Canada, is that every province will do it differently; there will be holes in the legislation; and people will be disadvantaged and actually misled because of that. They won't know what their protections are.

It's critically important, in our opinion and in the opinion of the Canadian Coalition for Genetic Fairness, to have the pan-Canada bill, the genetic non-discrimination act, in conjunction with the clarity in the Canadian Human Rights Act, in the Labour Code, and in the provincial human rights acts. It's all necessary for all Canadians to be protected.

12:35 p.m.

General Counsel and Senior Government Advisor, Centre for Israel and Jewish Affairs

Richard Marceau

Mr. Cooper, I was given by the clerk only a few minutes ago, so I haven't had the chance to review that. I was looking forward to knowing where the government stood, because we were also hearing some noises that they were uncomfortable with the.... We'll have to review that and get back to you.

Let me just say that it's not only a question of discrimination. There are also health implications to this. As a society, if people knew about the genetic problems they had, and they could use preventative measures, that could save the government and our health care system, which is strapped, a lot of money. It goes beyond simply discrimination as to how we could use the Canadian Human Rights Act. There is also the social evil, so to speak, that we're fighting, which necessitates penalties that are in line with that.

12:35 p.m.

Director of Policy, Centre for Israel and Jewish Affairs

Noah Shack

I would only add that it's not just about the discrimination, which in and of itself is a bad thing and needs to be addressed. The outcome of that discrimination can have life-and-death implications for people's health, so it does have multiple dimensions that other forms of discrimination may not have.

12:35 p.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

Thank you for that. I certainly agree with the observation, from all of the witnesses, that people are effectively penalized right now. They are put at risk for taking proactive steps that benefit individuals' health and Canadian society as a whole.

As you said, Mr. Marceau, it may have the impact of reducing the overall health cost over the long term.

In terms of the patchwork, is Ontario the only province that has legislation pending on this?

12:35 p.m.

Chair, Canadian Coalition for Genetic Fairness

Bev Heim-Myers

As far as I know, at this point in time, yes, it is.

12:35 p.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

Okay.

One observation you made, Ms. Heim-Myers, was that certain persons don't want to undertake genetic testing out of fear not only for themselves but also for their relatives.

Clause 5 of this act provides that an individual can consent to disclosure of information related to their genetic testing, but we know that when one undertakes genetic testing, and that testing indicates a predisposition to a disease, it may also indicate a predisposition for relatives or family members.

There are also privacy issues in that context, and I was wondering if you might be able to comment on that a little further.

12:35 p.m.

Chair, Canadian Coalition for Genetic Fairness

Bev Heim-Myers

If I understand correctly, you are asking if people are not getting genetic testing because they are worried for their family members. Is that right?

12:35 p.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

Well, you observed that people are not getting genetic testing out of fear for themselves but also for family members, and I was just making the observation that, with genetic testing, results can indicate a predisposition to a disease not only in an individual but also perhaps in certain family members as well.

November 17th, 2016 / 12:35 p.m.

Chair, Canadian Coalition for Genetic Fairness

Bev Heim-Myers

Yes. People are choosing not to get genetic testing because they are afraid that they will out their entire family. When you talk about a privacy issue with insurance—and it isn't just about insurance, but this an example to make it clear—if an individual has genetic testing and their physician knows about it, then, when the person signs off for life insurance and they sign off for their physician to give health information, that's part of the file. The whole family is now part of this file, and that is a concern.

12:35 p.m.

Liberal

The Chair Liberal Anthony Housefather

The current draft of Bill S-201 says that a person can themselves consent to disclose, and by consenting to disclose, they are potentially impairing their family members.

I think what Mr. Cooper was asking was whether you recommend any amendment to that section.

12:35 p.m.

Conservative

Michael Cooper Conservative St. Albert—Edmonton, AB

That was the question.

12:35 p.m.

Chair, Canadian Coalition for Genetic Fairness

Bev Heim-Myers

If we have the genetic non-discrimination act, whereby you cannot use genetic test information against an individual, and it criminalizes the behaviour, that is the deterrent. That is the protection. If it's just in the Human Rights Act, it's not a deterrent, and people would be open to discrimination in the family.

12:40 p.m.

Liberal

The Chair Liberal Anthony Housefather

Thank you very much.

Mr. Fraser, go ahead.

12:40 p.m.

Liberal

Colin Fraser Liberal West Nova, NS

Thank you, Mr. Chair.

I thank all of the witnesses for being here with us today and for providing this information.

I'd like to start with you, Ms. Heim-Myers, if I could. You talked about other jurisdictions that have taken measures to combat discrimination against genetic testing. In those jurisdictions that you referenced, since people are no longer worried that they are potentially going to face discrimination, has the amount of genetic testing gone up? Do we have any information on how that works in other countries?

12:40 p.m.

Chair, Canadian Coalition for Genetic Fairness

Bev Heim-Myers

I'm sorry, I don't have a statistic showing that genetic testing has gone up. I do know that the premiums in other countries have gone down, so the health and well-being of the community have gone up in different jurisdictions. It's the tie of being able to manage your health and being able to understand your predisposition to what could be a disease—early detection, early prevention, and appropriate treatment.

I'm sorry, I don't have a statistic on the actual genetic tests.

12:40 p.m.

Liberal

Colin Fraser Liberal West Nova, NS

Generally speaking, if the premiums have gone down, is that tied directly to the fact that people are now able to get genetic testing, or is it just overall? Could it be for other reasons?

12:40 p.m.

Chair, Canadian Coalition for Genetic Fairness

Bev Heim-Myers

I'll choose that it's tied because people are taking more control of their health without fear.

12:40 p.m.

Liberal

Colin Fraser Liberal West Nova, NS

Okay.

I'd like to ask Mr. Shack or Mr. Marceau if they have any information about other jurisdictions where you can't discriminate for genetic testing. Have numbers gone up? Have we seen this in Jewish communities and other jurisdictions where there is no longer this discrimination?

12:40 p.m.

Director of Policy, Centre for Israel and Jewish Affairs

Noah Shack

I can't tell you specific numbers in other communities. I can tell you that in our community it's a priority to inform people about the values of genetic testing. We try to get the word out about what's possible and the potential benefits. One of the major stumbling blocks to doing that, and getting more people to take control of their health is, of course, genetic discrimination. Addressing that problem would enable more people to know about the benefits and to take action, so conceivably it would result in more people doing so as well.

12:40 p.m.

General Counsel and Senior Government Advisor, Centre for Israel and Jewish Affairs

Richard Marceau

I can tell you in the, let's say, more orthodox segments of our community, before people actually get married, they pass genetic tests as a matter of course. If there are issues, they will call off the marriage, and that's not unheard of. Having to pass those tests early on at 18 or 19—we're talking about people who get married very young—and having to disclose those tests could have an impact for the rest of their lives.

12:40 p.m.

Liberal

Colin Fraser Liberal West Nova, NS

When we had Senator Cowan in on Tuesday, one of the things he raised was that if this is placed only in the Canadian Human Rights Act and not in the other measures provided for in this legislation, would there be a worry of a false sense of confidence by Canadians that they are protected because it's in the Canadian Human Rights Act, but there would actually not be the protection Canadians thought there was?

I'd like all of you to comment on that, please.

12:40 p.m.

Director of Policy, Centre for Israel and Jewish Affairs

Noah Shack

I agree with that assessment. The average person on the street doesn't understand the distinction between the different areas of law that we're talking about in the bill. Somebody hears that the Canadian Human Rights Act has been amended to prevent genetic discrimination and they think it's comprehensive. It's limited. It doesn't do everything. Certainly we want to avoid that perception and ensure that people don't put themselves in harm's way.

12:40 p.m.

Chair, Canadian Coalition for Genetic Fairness

Bev Heim-Myers

It's very important for it to go into the Canadian Human Rights Act and the provincial human rights acts, but it's not a deterrent. It's not a deterrent to the behaviour of using genetic information against people. It's their personal private information, and if a person takes it through the courts or takes it to the tribunals, if a breach has happened in the human rights act, the onus is on the individual. It often happens that when people are young they don't have the financial wherewithal, and they don't want to out their entire family. In a case like that, you're taking your whole family to the provincial human rights tribunals. If there is a deterrent in an overriding pan-Canadian law, that will be the deterrent, and people will be protected.

12:45 p.m.

Genetic Counsellor and Past President, Canadian Association of Genetic Counsellors

Clare Gibbons

It's an interesting question. I think the burden will still fall on the physician and the genetic counsellor who are offering the genetic tests to the patient to explain to the patient whether they're protected or not. If we continue to hear of cases that we consider to be genetic discrimination after the amendment to the human rights occurs, then we will continue to have to bring this up to our patients. The big questions that come up are about insurance and employment. Again, if we don't feel there's enough protection there, we will have to tell them, and it will continue to affect their decisions about whether to go on with genetic testing.

12:45 p.m.

Liberal

Colin Fraser Liberal West Nova, NS

Thank you.

Do I have time for another quick one?