Guelph man seeks protection against ‘genetic discrimination’

by jeeg 27. June 2011 22:49

Kevin Douglas, whose mother and two brothers succumbed to rare genetic ailment Huntington’s disease, has seen discrimination first-hand.

The Guelphite said he well understands the current drive to change the Canadian Human Rights Code to ban genetic discrimination that is making it difficult for families to seek gainful employment and private life or health insurance.

“That’s a problem. I have tried to get insurance and it is difficult,” Douglas said Thursday, adding that is the case even though he remains free of the debilitating neurodegenerative ailment. The only private insurance the purchasing manager has is through the construction firm he works for.

He welcomes a private member’s bill that Eglinton-Lawrence Liberal MPP Mike Colle tabled in the provincial parliament, which prohibits the use of genetic characteristics as the basis for discrimination.

“It would help out,” Douglas said. “I’m glad people are looking into this.”

The bill, however, died on the order paper when the legislature dissolved for the summer recently. With a fall provincial election approaching, it was unclear this week whether Colle will reintroduce the bill if re-elected.

Guelph MPP Liz Sandals said Thursday she needs to study genetic screening further, but saw merit in considering this.

“The underlying issue is a real issue,” Sandals said.

Bev Heim-Myers, volunteer chair of the Kitchener-based Coalition for Genetic Fairness, which has 15 member organizations, said she knows of one Ontario woman asked by a potential employer to undergo genetic testing “before a decision” to hire.

“That’s not right,” said Heim-Myers, who’s also chief executive of the Huntington Society of Canada, also Kitchener headquartered. The organization recently created a chapter in the region, including Guelph.

Huntington disease affects 1 in 10,000 individuals in Canada, though Heim-Myers said the figure is likely closer to 1 in 6,000. “Many people, because of genetic discrimination, will not come forward,” she said. “They live in fear of discrimination.”

The higher incidence rate represents almost three dozen individuals in Guelph and surrounding county, and 90 in Waterloo Region.

People keeping the illness hidden raises two concerns for Heim-Myers: they may not be getting the medical help they need, nor participating in studies and research against the ailment.

“It’s an awful disease. It impacts generations.”

Heim-Myers said all people “expect to be treated fairly.” The human rights code doesn’t allow discrimination based on individual characteristics like race. “The same should apply to our DNA.”

Vic Kirsch, Guelph Mercury (Canada)


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