11/12/2014 - David Langtry speaks about genetic discrimination before the Senate Committee on Human Rights

Speaking notes for

David Langtry

Acting Chief Commissioner

Canadian Human Rights Commission

Presentation to the Senate Standing Committee on Human Rights

on Bill S-201, an act to prohibit and prevent genetic discrimination

December 11, 2014

Ottawa, Ontario

 

Check against delivery

 

Madam Chair, 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 colleagues. On my left is Marcella Daye, Senior Policy Advisor in our Policy, Research, and International Affairs Division. On my right is Fiona Keith, Acting Director of Litigation Services Division and Senior Counsel.  

We are here today with three messages for your consideration: 

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—as is currently the case.

And third, 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 a word about who we are and what we do. 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.  

The Commission administers the Act. We receive discrimination complaints regarding employment or services under federal jurisdiction. This includes the federal public sector, and private sector companies in industries such as transportation, telecommunications and banking.

The Commission screens all the discrimination complaints it receives. In some instances, we refer complaints to the Canadian Human Rights Tribunal for adjudication. The Tribunal operates independently of the Commission.

***

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. 

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 by insurance companies—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. It may one day measure other propensities, such as personality traits. 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… 

… just as we support the commitment made in the Speech from the Throne, “to prevent employers and insurance companies from discriminating against Canadians on the basis of genetic testing.”

I am optimistic that adding this protection would benefit genetic research and individual health. 

Rather than discourage people from getting tested for inherited characteristics that could one day affect their health, it would likely encourage testing and thus advancements in scientific knowledge that offer so many potential benefits.  

Thank you. 

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

- 30 -