Sen. James Cowan, Canadian Coalition For Genetic Fairness Win U.S. Advocacy Award

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

Sen. 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.

james cowan
Leader of the Opposition in the Senate Sen. James Cowan speaks at a news conference in the Senate foyer on Parliament Hill in Ottawa on Tuesday, June 9, 2015. (Photo: Matthew Usherwood/CP)

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.

Conservatives promised legislation in 2013

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.

"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.

"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 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."

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