I have a family history of breast cancer and I am thinking about having a genetic test to see if I am at risk. A genetic counsellor told me that the federal government is considering legislation – called Bill S-201 – that would protect the privacy of my genetic tests. What's happening with that bill and what exactly would it do?
Bill S-201 – also known as the Genetic Non-Discrimination Act – will soon be debated by the House of Commons, after passing unanimously in the Senate in April.
If the politicians give it the green light, the bill would be sent to a committee for study and possible revisions, and then go back to the Commons for a final vote.
The legislation, as it currently stands, would prevent employers or businesses from requiring you to take a genetic test or forcing you to release the results of a test if you have had one.
"The bill essentially makes it illegal to discriminate against a person for having a particular genetic make-up," says Liberal MP Rob Oliphant, who is a key supporter of the legislation originally proposed by Senator James Cowan.
And, in particular, it would prevent your genetic tests from being used by insurance companies which have traditionally required customers to disclose medical background and lifestyle practices to set rates for insurance policies.
The proposed law comes at a time when genetic discoveries are promising to transform the practice of medicine. There are more and more tests that may reveal if an individual is at an elevated risk of developing various illnesses.
Yet, not everyone welcomes the flood of new tests. Numerous studies have already found that some people with a family history of certain conditions are deciding not to have the tests because they fear genetic discrimination if the results are disclosed to an insurer or employer, says Yvonne Bombard, a scientist at the Li Ka Shing Knowledge Institute at St. Michael's Hospital. The most common concerns include difficulty getting insurance, loss of employment and social stigmatization.
She also points out researchers are worried that people will be reluctant to take part in studies if the results of their genetic tests can't be kept confidential.
"We want to make sure that, no matter why people have a test, their genetic characteristics are not used against them," Oliphant says.
However, those in the insurance sector feel the legislation is unfair to them. They are worried that people with genetic predispositions to disabling or life-shortening illnesses will load up on life, critical illness or disability insurance.
"You would buy a lot more insurance if you knew you had a genetic condition – that's human nature because you would want to take care of your family," says Frank Swedlove, president of the Canadian Life and Health Insurance Association.
"The fundamental basis of insurance is the concept of equal knowledge between the insured and the insurer," he explains. If customers can keep their genetic tests secret, then insurance firms are going to be paying out a lot more in unexpected claims and that is going to eventually push up the cost of insurance for everyone, he says.
Mr. Oliphant sees the situation differently. He argues that some people might be able to take action to reduce their chances of getting a disease if a genetic test reveals they are at high risk.
Two studies commissioned by the Office of the Privacy Commissioner of Canada (OPC) concluded the proposed legislation "would not have a significant adverse impact on the viability of the life and health insurance industry."
That finding is partly based on the fact that there is still a lot of uncertainty around the interpretation of genetic tests. Other factors, such as lifestyle and the environment, come into play. And, at present, there are only a handful of illnesses that can be predicted with a high degree of certainty by a genetic test.
But the studies also acknowledge that medical technology is changing rapidly and genetic tests may become far more reliable in the future. For that reason, the impact on the industry "should be revisited on a periodic basis" says the OPC.
Oliphant says he would welcome such an amendment being made to the bill.
It is also worth noting that the regulation of insurance comes under the jurisdiction of the provinces and territories. Although the legislation focuses on prohibiting discrimination, rather than on any particular industry, the insurance sector could decide to challenge the law in the courts on the grounds that it is not constitutional.
But Swedlove says he would prefer to see insurance simply exempted from the act.
If people are worried about insurance, he suggests, they could buy a policy first and then have a genetic test. They would be under no obligation to provide the results once they lock in their rates.
Paul Taylor is a Patient Navigation Advisor at Sunnybrook Health Sciences Centre. He is a former Health Editor of The Globe and Mail. You can find him on Twitter @epaultaylor and online at Sunnybrook's Your Health Matters.