Presentation to the Senate Standing Committee on Human Rights

To the Chair and Honourable Members,

Thank you for inviting the Canadian Human Rights Commission to contribute to your study of Bill S-201, an act to prohibit and prevent genetic discrimination.

I would like to introduce my colleague, Marcella Daye, Senior Policy Advisor in our Policy, Research, and International Affairs Division.

We are here today to reiterate important messages that my predecessor shared with this committee in 2014.

First, prohibiting discrimination based on genetic characteristics would protect Canadians from the risk that their genetic information could be used against them. 

Second, adding “genetic characteristics” as a prohibited ground would enable Canadians to bring complaints of genetic discrimination to the Commission without having to link them to other grounds. This would improve access to justice for everyone, especially people in vulnerable circumstances.

Finally, by making this protection explicit in law, it would be clear that everyone has a right to be treated equally regardless of their genetic characteristics.

But first, allow me to briefly tell you about who we are and what we do. As you may know, Parliament designed the Canadian Human Rights Act to promote equality and protect Canadians from discrimination based on grounds such as age, sex, disability, race and so on—eleven grounds in all. 

Our vision is a society where everyone is valued and respected.

Genetic research holds tremendous promise. It has inspired new methods of diagnosis and treatment. Some believe it will revolutionize healthcare.

But while many recognize the benefits, there remains a great deal of uncertainty. 

Genetic research is accelerating. It’s normal that people should be curious about what their genes can tell them. Do I have a marker for a hereditary illness? Or have I inherited a propensity to be a worrier, or, on the contrary, a fearless leader?

It may one day measure other propensities, such as personality traits. For example, genes affect our sense of purpose, how well we get along with others and our propensity for learning.

These are all important traits when it comes to hiring.

Genetic Information about our genetic makeup is deeply personal. We have heard that some individuals choose to avoid genetic testing out of fear—fear that the very tests meant to help may one day be used against them.

They fear they could be discriminated against—by employers perhaps, or in service contracts—because of what their genes say about them.

And who can blame them? Our rights in this area are not clear.
Genetic discrimination is an emerging area of law that remains virtually untested.

Canadian jurisprudence in this area is almost non-existent.

The Commission does have authority, under the Canadian Human Rights Act as it stands today, to accept discrimination complaints regarding genetic characteristics, but only as long as they are linked to another ground, such as disability.

Clearly, this is an overly narrow approach.

As the pace of research accelerates, genetic testing will tell us ever more about who we are.

What if an employer were to require certain genetic profiles as hiring criteria? Would that discriminate against people who don’t conform, but may have the required education and experience?

Is this the kind of society we want in Canada?

Parliament has long recognized that laws must evolve in order to keep pace with social and technological change. 

Adding “genetic characteristics” to the list of prohibited grounds under the Canadian Human Rights Act would help accomplish this. It would allow the Commission to accept genetic discrimination complaints unrelated to existing grounds.

Even more importantly, it would make these protections explicit. It would make it clear that everyone has a legal right to be treated equally no matter who they are or what their genetic makeup says about them. And it would help employers understand their obligations and build in protections to prevent discrimination.

For this reason the Commission supports Bill S-201.

In conclusion, I believe genetic tests are meant to help you.

Without these protections, genetic information could actually be used to make your life more difficult.

Taking a test that could help save your life shouldn’t have to be a calculated risk.

Thank you.

My colleagues and I will do our best to answer any questions you may have.