Protection Against Genetic Discrimination Act

An Act to amend the Canadian Human Rights Act, the Privacy Act and the Personal Information Protection and Electronic Documents Act

This bill was last introduced in the 41st Parliament, 2nd Session, which ended in August 2015.

Sponsor

Peter MacKay  Conservative

Status

Second reading (House), as of June 9, 2015
(This bill did not become law.)

Summary

This is from the published bill. The Library of Parliament often publishes better independent summaries.

This enactment amends the Canadian Human Rights Act to provide that discrimination on the ground of a predisposition to disability that is inferred from the results of genetic testing is deemed to be discrimination on the ground of disability. It also amends the Privacy Act and the Personal Information Protection and Electronic Documents Act to specifically include information resulting from genetic testing.

Elsewhere

All sorts of information on this bill is available at LEGISinfo, provided by the Library of Parliament. You can also read the full text of the bill.

Genetic Non-Discrimination ActPrivate Members' Business

September 20th, 2016 / 6:15 p.m.
See context

Conservative

Garnett Genuis Conservative Sherwood Parkā€”Fort Saskatchewan, AB

Mr. Speaker, this is my second speech of the day and the second time today I am agreeing with a bill coming from the government side, so lightning does strike twice. In fact, I am even agreeing with my friend from Don Valley West. I think it is fair to say that we have not always agreed on things that have been discussed in this place, but I very much appreciate the energy and the hard work he brings to this and other causes we have discussed over the last year.

I will be supporting, and I believe most, if not all, of my colleagues will be supporting, this piece of legislation, which aims to end genetic discrimination in Canada.

I think it is important to review that this approach has a history of multi-partisan support. Our previous Conservative government proposed Bill C-68. There have been various bills from I think all three of the major parties at different times. I think ours was the first government bill proposed on this issue, and it did not make it through in time to pass.

It is good to see that there is a consensus on this issue. It is something that is particularly important to all members of this House.

I want to identify some background on genetic discrimination and then go through what I see as three principal arguments in favour of moving forward with this legislation.

As other colleagues have discussed, genetic tests now, as science continues to develop, allow us to know all kinds of information about what diseases we may be exposed to or may be more likely to contract as a result of our genetics. This information is helpful to all of us as we seek to combat or prepare for the possibility of disease.

All of us have an interest in ensuring that this area of science is developed and that people access information that allows them to live healthier and more informed lives. Yet it is currently possible for an employer to discriminate against someone on the basis of a genetic test. It is possible for an insurance company to deny an insurance claim on the basis of a genetic test someone had. This is what has come to be called genetic discrimination; it is when someone is treated differently on the basis of information that is revealed by a genetic test. The bill aims to combat that.

As other colleagues have mentioned, I think there will be a requirement for complementary provincial legislation as well. I am open to hearing amendments. Generally speaking, I like the bill the way it is, but yes, there is a need for complementary provincial legislation, and hopefully we will see federal engagement, working with the provinces, to encourage the development of that complementary legislation.

I would like to identify what I see as three principal arguments in favour of the bill. First, genetic discrimination is discrimination. It is very clearly a kind of discrimination. I think all of us in this place accept that discriminating against someone on the basis of any identifiable characteristic does not have a place in Canada.

Our genetics are very much beyond our control, in the same way that any number of other characteristics are, so if we accept the basic principle of non-discrimination, then of course, that applies. There are some exceptions, of course, in our established human rights jurisprudence, things like a bona fide occupational qualification. We allow exceptions, in terms of our human rights law on discrimination, in those cases.

It is very important to note the way genetic testing works. Genetic testing identifies the possibility that people could develop an illness in the future. It demonstrates that they might be at a higher risk for something in the future. However, it is not a present limitation on their qualifications. The fact that people might develop a certain disease in the future that would prevent them from doing their jobs would not in any sense qualify as a legitimate basis for discrimination in the present time, before they have developed the ailment, an ailment that they may in fact never develop in the future. This is discrimination without justification, without the justification we see typically identified in our human rights jurisprudence.

The other thing to acknowledge about this kind of discrimination is that it is discrimination that is often associated with other discriminations. There are certain identifiable groups that, because of their genetic structure, are more likely to face certain kinds of genetic challenges. These groups in particular have been vocal in identifying the specific problem of genetic discrimination as it particularly adversely affects their own community.

We welcome the input of those groups that have been supporting this on the basis of particular cultural communities, as well as the many groups representing awareness about different diseases that have come forward and talked about this as well. Genetic discrimination is discrimination, and on that basis it is unacceptable.

Second, I want to highlight that Canada really has been an outlier when it comes to genetic discrimination. In fact, we are the only country in the G7 that does not, in some way, have legislation that is confronting this challenge. We need to be conscious of that. It does not necessarily mean that we have to do what the rest of the world is doing, but we should, at the same time, sit up and take notice when Canada is out of step in this way. Other countries have seen the value of protecting people's ability to access genetic information without worrying that it could somehow lead to discrimination against them, that it could somehow limit their opportunities going forward.

I think it is important that Canada gets in line with what the rest of the world is doing and that we get in line with what is happening in other parts of the G7 in order to protect these fundamental rights.

The third point I want to make is the issue of perverse incentives. I want to talk about this in two parts. Ideally we would have as much research happening as possible. We would not allow the emergence of any kind of disincentive for research or participation in research. Also, we would not want any kind of disincentive for people to get medical information about themselves that would be useful for them in the future.

What we see with the current reality is that it actually creates perverse incentives in both of these areas. First of all, there may be cases where people are reluctant to participate in research, because in the process of that research they will gain information about themselves, or there will be advances in genetic research which could lead to further discrimination against people like them, people who share their kind of genetic makeup.

We could imagine cases in which a person chooses not to participate in genetic research because they are afraid that further identification of genes that cause a particular disease would be subsequently used for discrimination. We obviously do not want to see that. We want to see as much research as possible that will encourage information, as well as well-being.

Introducing the legislation, this prohibition on genetic discrimination, takes a positive step in terms of removing that disincentive. Now there is no longer the disincentive for people to be involved in research.

The other part of this perverse incentives issue is right now the current reality is one in which people have a disincentive to get genetic information about themselves. If they have this genetic information, there is a real risk that insurers will ask for it and use that information against them. That creates a issue, then, for people who want to know what their genetic situation is and if they are more at risk for something, but then choose not to because of their fear of discrimination.

I want to just make this concrete in the remaining time I have. We know of BRCA1 and BRCA2, which are genetic markers for breast and ovarian cancer. Ashkenazi Jewish women are 10 times more likely to carry these cancer-causing variants than the general population.

We know then that there is this greater risk with this community. If a person knows that they are at a greater risk for contracting a certain kind of cancer, they might consider it worthwhile to get information about whether they have those genetic markers. Then it will perhaps affect the frequency of the tests they receive and the way in which they monitor certain potential markers for that disease. Yet someone might choose not to get this test, which would put them at greater risk, simply because of the fear of discrimination.

Genetic discrimination is a form of discrimination. Up to this point Canada has been an outlier in this respect. We need to confront these issues of perverse incentives. We need to encourage research. We need to encourage people to get tested and get information about themselves.

For these reasons, I will be supporting this excellent legislation and I hope my colleagues will as well.

Protection Against Genetic Discrimination ActRoutine Proceedings

June 9th, 2015 / 10:05 a.m.
See context

Conservative

Peter MacKay Conservative Central Nova, NS

moved for leave to introduce Bill C-68, An Act to amend the Canadian Human Rights Act, the Privacy Act and the Personal Information Protection and Electronic Documents Act.

(Motions deemed adopted, bill read the first time and printed)