Chief Commissioner’s Presentation to the House of Commons Standing Committee on Justice and Human Rights on Bill S-201, an act to prohibit and prevent genetic discrimination

Speaking notes for

Marie-Claude Landry, Ad. E.

Chief Commissioner
Canadian Human Rights Commission

Presentation to 
the House of Commons Standing Committee on Justice and Human Rights
on Bill S-201, an act to prohibit and prevent genetic discrimination

November 15, 2016

Ottawa, Ontario

 

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Mr. Chair, Honourable Members,

Thank you for inviting the Canadian Human Rights Commission to speak before your committee on Bill S-201, an act to prohibit and prevent genetic discrimination.

I would like to introduce my colleagues, Fiona Keith, Counsel for the Commission and Marcella Daye, Senior Policy Advisor.

We would like to leave the Committee with three main messages today.

First, we support Bill S-201 and we strongly support adding the ground of “genetic characteristics” to the Canadian Human Rights Act.

Second, while the change to the CHRA would be a positive step, it cannot alone address all the concerns surrounding the use of genetic information.

And third, if Parliament adopts robust, comprehensive and forward-thinking legislation to regulate the use of genetic information, it would make Canada a world leader in this emerging human rights issue.

Before I elaborate on those three points, I’ll speak briefly about the current context of genetic discrimination and human rights law in Canada.

Parliament designed the Canadian Human Rights Act in 1977 to promote equality and to protect Canadians from discrimination based on grounds such as age, sex, disability, and race. 

Canada’s provinces and territories all have similar human rights laws.

Through the years, our human rights laws have evolved to keep pace with social change, and with technological advances. 

Genetic research holds tremendous promise and it is developing quickly. 

It has inspired new methods of diagnosis and treatment. 

Some believe it will revolutionize medicine and health. 

But as Parliament has been examining Bill S-201, we have learned that some individuals choose to avoid genetic testing out of fear.

They fear that the very tests meant to help them may one day be used against them or their children.

People are afraid of discrimination—by employers, by schools or by insurance companies—because of what their genes may say about them. 

In some cases, parents have to decide whether to test their child—knowing that the child’s genetic information will follow them into adulthood, and could negatively affect them later in life.

A test that could help save someone’s life should not be a calculated risk.

The scope of information that genetic testing can reveal about us—both now and in the future—is extraordinary. 

And it goes well beyond our health information.

In the future, these tests could answer even more questions.

What is my Indigenous ancestry?

Do I have a genetic propensity to be anxious, a good athlete, or a natural leader? 

Without regulation, the vast information contained in our genes could be used, shared, or accessed—without our knowledge.

The regulation of genetic information is an emerging area of law that remains virtually uncharted.
 
Other jurisdictions, like Ontario, are considering legislation.

But across Canada, jurisprudence in this area is almost non-existent. 
Our rights in this area are not clear.

Last February, during my first Parliamentary appearance as Chief Commissioner of the Canadian Human Rights Commission I spoke on this very issue and this Bill.

At that time, I told the Senate Committee that the Commission supports adding the ground of “genetic characteristics” to the CHRA.

We see this legislative change as an important and positive step towards better protecting people in Canada from genetic discrimination. 

As it stands today, the Commission has the authority, under our Act, to accept discrimination complaints based on genetic characteristics only if the complaint is linked to another ground, such as disability.

Adding the ground of “genetic characteristics” to our Act, would allow people to file these complaints without having to link it to another ground. 

 It would make it clearer to people in Canada that they have a right to be treated equally regardless of their genetic characteristics—and regardless of whether they choose to access genetic testing or share the results

This brings me to my second point.

While changing the CHRA would be a positive step for human rights, it cannot address all the concerns surrounding genetic discrimination. 

Other stakeholders and experts from across Canada agree. 

There would still be a clear need to address the very real and very serious fears of discrimination raised during the Senate debate on Bill S-201. 

…fears about test results being used against us. 

…fears for our children.

We believe that in order to properly address these concerns, it is going to take a concerted national approach.

This brings me to my third and final point—in order to prevent harm and keep people in Canada safe, robust, forward-thinking, and comprehensive laws are necessary. Doing so, would make Canada a world leader in this emerging issue.

We encourage the federal government to take the lead. 

...to pass robust national legislation.

...to meet with provincial and territorial governments to determine how best to implement nation-wide protections against genetic discrimination.

...to consult with stakeholder groups and human rights commissions across Canada. 

We believe this concerted national approach is the best way to ensure that Canada’s human rights protections against genetic discrimination are robust, forward-thinking, and comprehensive.

To conclude, I believe genetic information and genetic tests are meant to help us.

But without adequate human rights protections and regulation of this information, genetic information could actually do more harm than good.

Taking a test that could help save one’s life shouldn’t be a calculated risk.

My colleagues and I welcome your questions.

Thank you.

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