Is privacy legislation needed for genetic tests?
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Question: 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?
Answer: 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 in order 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, the flood of new tests poses concerns for some. 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 in Toronto. The most common concerns include difficulty getting insurance, loss of employment and social stigmatization.
Bombard carried out the first study of Canadians who have a close family member with Huntington’s disease. If a parent has the degenerative brain disorder, the children have a 50% chance of getting it too.
In her survey of 233 volunteers, 86% were worried about possible discrimination and 40% said they had experienced at least one example of genetic discrimination, most involving insurance.
She also points out that many researchers are now 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,” says Oliphant, who represents the Toronto riding of Don Valley West.
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.
Oliphant sees the situation somewhat 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. He points to the example of Hollywood actress Angelina Jolie who had a double mastectomy and her ovaries removed after a genetic test revealed she carries a faulty copy of the BRCA1 gene linked to breast and ovarian cancer.
“These tests will help ensure that people have better health outcomes and society as a whole will be better off,” says Oliphant. The government, he adds, should try to remove potential barriers to testing – such as the fear of genetic discrimination.
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. Genes are not necessarily destiny. 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. “I think it is always a good idea to evaluate and update.”
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 life, critical illness and disability insurance exempted from the act right from the start.
If people are worried about qualifying for insurance, he recommends the “buy now, test later” approach.
“You can get an insurance policy which fixes the rate for the rest of your life and then go get a genetic test done,” says Swedlove. “That is a totally acceptable thing to do because, at the time you bought the insurance, you did not know the results of the genetic test.”
Nonetheless, numerous patient advocacy groups say that government intervention is still needed to maintain the privacy of genetic test results. So the lines of the opposing sides are clearly drawn. As the matter is debated in the House of Commons, you can expect the insurance sector will continue to voice its concerns about the bill, which could challenge the basic principles upon which the industry operates.
Paul Taylor, Sunnybrook’s Patient Navigation Advisor, provides advice and answers questions from patients and their families. His blog, Personal Health Navigator, is reprinted on Healthy Debate with the kind permission of Sunnybrook Health Sciences Centre. Follow Paul on Twitter @epaultaylor.