By Faye Sonier
It hadn’t fully sunk in for me until I read Member of Parliament Libby Davies’ (Vancouver East) new Private Member’s Bill (PMB) that some Canadians face discrimination due to their genetic characteristics.
Genetic discrimination is a serious issue. Thanks to medical advancements and initiatives like the Human Genome Project, Canadians can now be tested for genetic conditions before health challenges even express themselves. This may lead to valuable preventative care and monitoring. However, it may also lead to discrimination. Ms. Davies’ PMB addresses that issue head on, seeking to amend the Canadian Human Rights Act to “add genetic characteristics as a prohibited ground of discrimination.”
On their website, the Canadian Coalition for Genetic Fairness (CCGF) provides a few examples of this form of discrimination: an insurer may refuse to provide coverage to an individual who is at a higher risk of a certain type of cancer or a parent may refuse to undergo testing in fear that new genetic information could lead to the loss of a job.
A few years ago, a University of British Columbia survey on individuals who carried the Huntington mutation or who were at risk for the disease found that they faced discrimination in multiple settings. Of the respondents, 29.2% reported discrimination regarding insurance, long-term disability or mortgage insurance. Some individuals related that they felt discrimination in family situations, notably in conversations regarding the establishment of a family. There were also reports of discrimination in the workplace and in the provision of health services.
Currently, Canada does not appear to have any specific legislation addressing this issue, though some international instruments, including The Universal Declaration of the Human Genome and Human Rights state that individuals should not face human rights violations or discrimination because of their genetic characteristics.
A variety of Canadian academics, lawyers and special interest groups are advocating for measures to be adopted to properly inform people at risk of genetic illnesses of the benefits and potential consequences of testing as well as for a legislative framework to ensure that rights are protected. Bill C-445 may very well be an appropriate first step in the building that comprehensive framework.
However, as a pro-lifer, when I read C-445, my thoughts went to the child in the womb. As a child in the womb is not considered a ‘human being’ in Canadian law, and has no legal or human rights, pre-born children regularly face discrimination based on genetic characteristics.
There are a number of means by which medical professionals can test for fetal genetic characteristics and each carries its own risks, including miscarriage and false positives. The testing can reveal a number of medical issues, from Down Syndrome to Tay-Sachs disease. Genetic information can be invaluable where it leads to the appropriate equipment and specialists being present for a high-risk birth. In other cases, it leads to abortion. As the New York Times reported a few years ago, 90% of women who are informed that their child has Down Syndrome choose to abort that child. (Canada-specific abortion data is difficult to obtain.)
I don’t make light of the circumstances couples face when they discover that their child may have a genetic disease or disability. In fact, my mother was asked to consider aborting me due to my future potential health challenges.
However, I must ask a question: What is the difference between a child in the womb with a genetic disease and a newly born child with the same genetic disease? Location? One moment the child is in the womb and the next, the child is not. That’s it?
What does that communicate? Societally, could we possibly concede that there are times in human development, where it is acceptable to end the life of someone with an identifiable genetic disability? If a person is born with disabilities, they receive respect, dignity and protection by society and the law. They are eligible for the best medical care and support we have available in order to live their lives to the fullest. But why wouldn’t their lives be worthy of respect and dignity 4 days, 4 weeks or 4 months before birth?
While Ms. Davies’ PMB brings attention to the important issue of genetic discrimination, I hope it also provides us with an opportunity to reflect on how we treat people with genetic disabilities throughout their entire lives, beginning in the womb.