Erin George and her daughter Quinn, 18 months, are photographed in their Toronto home on Nov 28 2012. Now 36, Erin was diagnosed with Retinitis Pigmentosa when she was 25. The degenerative genetic condition will eventually cause her to lose her eyesight . Legally blind, she can get around ok except at night when she needs to use a white cane.Fred Lum/The Globe and Mail
Yann Joly is a genetics professor at McGill University. To read Bev Heim-Meyers's case in favour of genetic discrimination legislation, click here.
"Discrimination" is a loaded term, especially within our progressive and diverse society. No one wants to see Canadians barred from access to jobs or insurance because of their health information, genetic or otherwise. But does this mean Canada should pass legislation that emulates anti-genetic discrimination laws already adopted in countries such as Australia, France and the United States? Not necessarily.
Theoretically, genetic discrimination could arise in a variety of contexts, such as immigration, adoption, education, health care and employment. But in Canada, reports of discrimination in these contexts remain largely undocumented – most debate revolves around access to
insurance. Some argue that insurers should be banned from using genetic information for underwriting purposes, but a more nuanced solution to this issue may be more appropriate than changing our laws.
In Canada, genetic discrimination is closer to myth than reality. Researchers have spent more than 20 years attempting to document genetic discrimination in the context of life insurance, yet data convincingly demonstrating its systemic existence have been found only in the context of Huntington's disease, a rare condition. Given these limitations, genetic discrimination cannot be accurately described as a widespread practice within the life-insurance industry. Even by the most generous estimates, it accounts for only a marginal number of cases of insurance refusals or increased premiums. Is it possible that discrimination is perceived rather than real?
From an ethical perspective, there is no justification for treating genetic information differently than other types of health information. Why should people have to declare risk factors such as high cholesterol levels or HIV-positive status to their insurers but not mutations in genes like BRCA1 and BRCA2, which are associated with a higher risk of breast cancer? Separating genetic information from other types of health information in law could promote the erroneous belief that most genes are the sole causes of disease (true for only a very small minority of diseases). The adoption of this practice could actually reinforce the stigmatization of genetically at-risk individuals.
Finally, law is not a panacea for all ills (real or perceived). Given the important changes that will be brought on by new technologies such as whole genome sequencing and personalized medicine, it would be premature and inefficient to adopt or modify a Canadian law to prevent genetic discrimination. Deciding on the scope of anti-discrimination legislation (i.e. defining what constitutes genetic discrimination) would be a major challenge given the fast rate of scientific progress and the fact that most medical conditions have genetic components – as demonstrated by existing laws in other countries. It is also unclear whether such a broad law would even protect those perceived to be at genetic risk in our society. Even with a Canadian law in place, insurers could find other ways of reaching their objectives through asking rigorous questions about familial history of diseases of applicants.
An efficient way to address concerns about genetic discrimination would be to promote the adoption of an agreement between the Canadian Life and Health Insurance Association and the Canadian government in which the insurers would agree not to use genetic information to rate insurance policies under a certain monetary limit. This type of flexible, time-limited agreement has already been successfully implemented in Finland, Germany and the United Kingdom, and would protect vulnerable individuals of our society while allowing us to respond quickly to scientific developments. As well, imposing greater transparency on insurers about their use of genetic information and disseminating clear, impartial information on genetics and insurance to all stakeholders to separate facts from fiction would go a long way toward solving the current dilemma.
To read Bev Heim-Meyers's counter-argument in favour of legislation, click here.