A step forward for those interested in genetic testing

An act to prohibit and prevent genetic discrimination is one step closer to law in Canada

Earlier this month, the Senate passed a bill that will position Canada one step closer to protecting its citizens from genetic discrimination. While it’s not yet law, this is a significant step toward preventive and personalized medicine in our country.

Bill S-201, also known as an act to prohibit and prevent genetic discrimination, allows Canadians to seek specific and broad genetic testing without a breach of privacy or the fear of reprisal from their insurer or employer.

The last G7 country to adopt this law
Today it is legally sound for insurers and/or employers to deny coverage or other goods or services based on the results of an individuals’ private genetic test results.

If passed, Canada would join the other six G7 countries, which already have legislation similar to what Bill S-201 is proposing.

Proposed law supports Canada’s R&D
This bill would also support our country’s growing research and development sector, where pioneering science and technology can thrive when not limited by unreasonable and unethical laws.

Innovation has already taken us so far. As Kerry Gold, a board member of the Huntington Society of B.C., wrote in The Globe and Mail earlier this month, “the issue is a priority because genetic study is transforming health care. The study of the human genome, or genetic sequencing, is a new, exciting and quickly growing frontier in medicine.”

Removes significant barrier
The consequences of the current law have been unfortunate and far reaching .

Many Canadians have chosen not to have genetic testing – even though the results could lead to life-saving screening techniques or surgical interventions.

I am personally aware of women who have decided not to have the BRCA1 and BRCA2 tests. Should a risk be found, they tell me, their insurance company is entitled to request that information, which could negatively impact that woman’s personal insurance rate and possibly those of her close relatives.

Cases where an individual’s insurance was or is at risk of being cancelled because of private genetic test results are well documented in Canada.

Privacy and protection for all
My colleagues and I believe genetic characteristics deserve a place next to race, national or ethnic origin, colour, religion, age , sexual orientation and other distinctions found in the Canadian Human Rights Act.

Genetic discrimination in Canada is real and that’s why the Canadian Association of Genetic Counsellors has been advocating for this bill as since its inception.

Insurer’s perspective 
As technology encourages health-care providers and clinicians to adapt to the evolving environment, so must the insurance industry. But there seems to be some unfounded hesitation to change on the part of insurers.

A CEO of a national insurer association recently wrote a column advocating against Bill S-201. He argued the current law is both fair to Canadians and keeps the price of insurance low and stable. Passing of this new bill, he wrote, would lead to a significant increase in the cost of life and health insurance across the country.

I respectfully disagree. His argument assumes that the current model of Canadian insurance must remain static. One of the advantages of Canada’s slower pace on this matter is that we have the opportunity to learn from sophisticated policies and best practices from the earlier adopters among the G7.

Finally, it may be helpful to remember that both the insurance and health-care industries encourage Canadians to make wise health choices to offset suffering and preventable costs in the long term. I look forward to, and I know my clients do as well, any new options the insurance industry creates.

What’s new, what’s next
While Bill S-201 would impact the way insurers operate, the wording of the bill that passed in April doesn’t explicitly name insurance companies.

The bill must pass through three readings in the House of Commons before final approval.

In the name of fairness, open medicine and scientific innovation, I look forward to that day.

Jill Davies is Director of Genetics at Medcan. She was the first Canadian to have her whole genome sequenced and allowed that data to be made publicly available to researchers online.

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