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Canada considers genetic discrimination law

1 March 2010
Appeared in BioNews 547

Canadians need better protection from genetic discrimination by insurers and employers, according to Winnipeg North MP Judy Wasylycia-Leis.

Mrs Wasylycia-Leis announced she will introduce a proposal into the Canadian House of Commons this spring amending the Human Rights Act to include 'genetic characteristics' as a prohibited ground for discrimination.

'This bill will stop Canadians' personal genetic information from being used against them', she said.

Canada needs to follow other nations' legislative initiatives, Mrs Wasylycia says. She reportedly believes abuse of genetic information will only increase without regulatory safeguards as more and cheaper genetic tests become widely available to detect a person's susceptibility to a growing range of genetic conditions.

'Unless genetic test results are protected, there's a real danger that Canadians will just refuse to be tested, putting their health at risk', she said.

The Canadian Coalition for Genetic Fairness (CCGF), a coalition of 15 disease-related associations dedicated to preventing genetic discrimination, helped Mrs Wasylycia-Leis draft the bill. The CCGF wants regulatory reform for the insurance industry in light of genetic advances.

Mr Don Lamont, CEO of the Huntington Society of Canada and chair of the CCGF, says predictive testing is 'a good thing', but warned it also carries 'a growing fear that the information can lead to stigma and discrimination'.

The bill would not explicitly prohibit insurers or businesses from demanding genetic tests, but will allow the courts to decide what practices are discriminatory. Mr Lamont believes it should also invite judicial examination of privacy legislation and genetic information.

The CCGF estimate that the number of genetic tests available over the last decade has increased from 100 to over 1,500.

Many nations are currently examining and regulating on genetic discrimination. In May 2008, the US passed legislation prohibiting employment and health insurance (not life insurance) genetic discrimination.

In the UK, there is a voluntary moratorium between the government and insurance industry on the use of genetic test results until 2014. Exceptions include testing for Huntington's disease in patients requesting life insurance above £500,000 or health cover above £300,000.

In comparison, France and Spain strictly outlaw all use of genetic test results by all insurers.

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