Skip to main content

Senator James Cowan, Leader of the Opposition in the Senate, talks to reporters during a break in the Senate sitting on Parliament Hill in Ottawa, May 21, 2013.

FRED CHARTRAND/THE CANADIAN PRESS

A Canadian senator is the co-winner of this year's second annual advocacy award from the American Society of Human Genetics.

Senator James Cowan has been cited along with the Canadian Coalition for Genetic Fairness for their roles in pushing a law that would prevent genetic discrimination in Canada.

Cowan was the sponsor for new legislation that would bar employers and insurance companies from demanding genetic testing – or asking to see genetic test results.

Story continues below advertisement

The fear of losing a job or insurance coverage has been repeatedly cited by Canadians who could potentially benefit from genetic screening but decline to be tested due to the ramifications.

The bill passed unanimously in the Senate in April and will be debated in the House of Commons this fall.

It would alter the Canadian Human Rights Act to include genetic discrimination, and it has penalties of up to five years in prison or up to a $1-million fine for those who abuse the law.

Canada is currently alone among G7 countries in not having any such protections.

Since the human genome was decoded in 2003, more than 33,000 genetic tests have been developed than can help determine everything from colour blindness to cancer risks and deadly hereditary diseases such as ALS and Huntington Disease.

The former Conservative government used its 2013 throne speech to promise laws on genetic discrimination but did not introduce the amendments until last June, shortly before the summer recess and August election call that killed all proposed government legislation.

Cowan, the leader of the independent Liberal senate caucus, has been pushing his Senate bill since 2013, along with the Canadian Coalition for Genetic Fairness.

Story continues below advertisement

"The international community is watching Canada as our legislation finally catches up to the benefits of scientific advancements in better understanding the human genome," said Bev Heim-Myers, the chairwoman of the coalition.

Cowan has repeatedly raised the cases of individuals who have told their doctors that they must decline genetic testing, fearing the implications for themselves or their extended family.

"In Canada, unlike the vast majority of other Western nations, if one has a genetic test, there is no law, either at the federal or at provincial level, that provides protection against a third party demanding access to the genetic test results and then using those results, often to one's detriment," Cowan told the Senate during debate of Bill S-201 in April. "That is what is called genetic discrimination."

The Maryland-based American Society of Human Genetics has been recognizing world-leading research in genetics since 1961 but this is just the second year for its $10,000 public advocacy prize.

The genetics society, in a release announcing this year's award, said it "has long supported the establishment of strong protections against genetic discrimination, including advocating for the passage of the U.S. Genetic Information Nondiscrimination Act in 2008, and recognizes a need for similar policies worldwide."

Report an error
Comments

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff. Non-subscribers can read and sort comments but will not be able to engage with them in any way. Click here to subscribe.

If you would like to write a letter to the editor, please forward it to letters@globeandmail.com. Readers can also interact with The Globe on Facebook and Twitter .

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff. Non-subscribers can read and sort comments but will not be able to engage with them in any way. Click here to subscribe.

If you would like to write a letter to the editor, please forward it to letters@globeandmail.com. Readers can also interact with The Globe on Facebook and Twitter .

Welcome to The Globe and Mail’s comment community. This is a space where subscribers can engage with each other and Globe staff.

We aim to create a safe and valuable space for discussion and debate. That means:

  • All comments will be reviewed by one or more moderators before being posted to the site. This should only take a few moments.
  • Treat others as you wish to be treated
  • Criticize ideas, not people
  • Stay on topic
  • Avoid the use of toxic and offensive language
  • Flag bad behaviour

Comments that violate our community guidelines will be removed. Commenters who repeatedly violate community guidelines may be suspended, causing them to temporarily lose their ability to engage with comments.

Read our community guidelines here

Discussion loading ...

Due to technical reasons, we have temporarily removed commenting from our articles. We hope to have this fixed soon. Thank you for your patience. If you are looking to give feedback on our new site, please send it along to feedback@globeandmail.com. If you want to write a letter to the editor, please forward to letters@globeandmail.com.
Cannabis pro newsletter