Just as amendments to the Health Insurance Act are making out-of-country and out-of-province genetic testing more accessible, new legislation is making its way through federal and provincial legislatures to ensure test results aren’t used to the detriment of their owner. The legislation targets not only workplace discrimination on genetic grounds but also its use by insurance companies to limit coverage.
Bev Heim-Myers, chairwoman of the Canadian Coalition for Genetic Fairness, has worked with both Sen. James Cowan on federal bill S-218, the genetic non-discrimination act, and MPP Michael Colle on Ontario’s bill 127. “We totally support both bills,” says Heim-Myers, who believes science has outstripped the law.
“The federal bill is the most comprehensive proposal that we have to date. It speaks to separate legislation to address genetic discrimination as well as adding genetic characteristics to the Human Rights Act and the labour code.”
There have been predictions of a “tsunami” of change in medical practice for more than a decade. Bill Carter, a partner at Borden Ladner Gervais LLP who practises health law, has many hospital clients.
“The impact of understanding the genome is hard to underestimate. Medicine has been practised on the basis of population analysis until now. Once you get into the genetics of the individual, you can be treated for your own unique characteristics. It is starting to revolutionize the practice of medicine. This legislation is critically important. It will force the public to debate it and we’re going to need to in the next 10 years.”
Elyse Sunshine, of Rosen Sunshine LLP, who’s on the research ethics board at Holland Bloorview Kids Rehabilitation Hospital, believes society is on the cusp of great change.
“There is more testing and testing itself is more sophisticated. People are getting a firmer understanding of what could happen. Should we run and panic? No, but I’m glad we’re talking about it.”
Heim-Myers agrees. “There has been incredible progress. Ten years ago, there were 100 tests that cost thousands of dollars to do. Now there are close to 3,000 tests, including direct-to-consumer testing from online companies for which there is no counselling. People are self-medicating and taking drastic measures with no help.”
On par with the questions over individual responses to genetic information is a widespread concern over the use third parties may make of it. In a Canadian study published in 2009 that surveyed more than 200 people with a family history of Huntington’s disease, almost 40 per cent of respondents reported they had experienced genetic discrimination. Most incidents occurred with respect to insurance, but there was also discrimination reported in employment, health care, and public sector settings. On the Canadian scene, employers and insurance companies are the main focus of the debate.
The coalition’s position is that it’s unfair to use genetic information to determine which individuals will get a job or insurance as the assumptions underlying the use of genetic information by insurers and employers are often faulty, misleading, and speculative.
Sunshine says the area is extremely complex and emotional.
“A test may show that you carry a gene, but the disease may never manifest itself. You may just be a carrier.”
Carter agrees. “The idea that an insurance company would make you go through some testing to discover genetic markers that make you susceptible is a double whammy. It makes the person commercially unviable and it’s also bloody bad news.”
Cowan explained the situation in more detail on bill S-218’s second reading when he noted “most genetic disorders are called ‘multifactorial,’ which requires a number of susceptibility genes, often combined with particular environmental factors, to result in someone actually developing the disease.” He noted there might be steps people could take to reduce the likelihood they’ll develop the disease if they know they carry a gene associated with it.
He went on to flag the problem facing Canadians if they have genetic testing.
“As a matter of public policy, I believe we should be removing roadblocks to people’s being able to access genetic testing. . . . Someone recognizing that they may be at risk of developing a genetic disease already has so many concerns to balance. Fear about insurability for themselves or their children or about how their employer will react simply should not be among them.”
Heim-Myers refers to a recent Alberta case where a judge ordered a young woman badly injured and traumatized in a house fire to get genetic testing. She’s from a family with a history of Huntington’s disease and the judge found the insurance company would face a reduced liability if she has the gene.
“You have to be ready to receive that information, and she’s not ready,” says Heim-Myers.
The coalition hopes at some point, the insurance industry in Canada will support genetic protection as happened in the United States. Heim-Myers refers to two papers commissioned by the federal privacy commissioner’s office that suggest insurance companies wouldn’t suffer an economic hit to their bottom line if they were unable to use genetic information in their decision-making process.
Sunshine notes the insurance industry is already discriminating.
“They ask a myriad of questions about your family history and predisposition to certain diseases and that brings you into a certain category. It’s the suggestion that you have to get a test in order to qualify that’s problematic.”
The industry’s current policy is that insurers wouldn’t require an applicant for insurance to undergo genetic testing. However, if genetic testing has taken place and the information is available to the applicants or their physician, the insurer would request access to it just as it would for other aspects of someone’s health history.
Carter still sees a problem with this policy.
“People may get genetic testing for reasons that are unrelated to insurability and general health, such as out of concern about having children or for the sake of children they have with genetic problems. Just having the information available may render you uninsurable if you disclose and will definitely render you uninsurable if you don’t disclose because of material non-disclosure.
“Currently, once they find out you have something, they can’t withdraw the insurance but they can refuse to renew it. It needs an actual condition, though. The concern with genetic testing is that it opens up to broader interpretation the likelihood that the people who really need insurance won’t be able to get it.”