CIJA has asked Canadians to contact Cabinet Ministers and our local Members of Parliament to support Bill S-201: An Act to Prohibit and Prevent Genetic Discrimination. Canada is the only country in the G7 without such a law, and this presents a problem for many of us. This bill isn’t theoretical for me. I have known people who were thrown into emotional turmoil by the fear that if they had genetic testing, they might be uninsurable, or might lose their job or be considered ineligible for one they wanted. However, if they weren’t tested, they would be unable to make an informed decision as to whether to have children, or how to plan their lives going forward, or might miss out on participating in cutting-edge medical trials to diagnose and prevent or treat illness.
As the social worker at the Memory Clinic at a teaching hospital in downtown Toronto, I sat in on hundreds of meetings where patients and their families were given the results of their diagnostic assessment by a multidisciplinary team (psychiatrist, neurologist, geriatric medicine specialists, speech language pathologist, neuropsychologist, and me). When they heard which illness was causing their dementia (there are far more than most people are aware of), one of the first questions invariably was whether it was genetic. Patient’s children were naturally worried about whether this would be their fate, and how their children might be affected. And, since we saw patients in their 40s and up, their children could be in their teens or 20s, in the process of making decisions about their futures. Now they had to figure out how to live their lives with this shadow hanging over them.
For most of the diseases that cause dementia, including the most common cause, Alzheimer’s disease, genetic testing is not recommended. Most Alzheimer’s is sporadic, meaning it could happen to anyone, with aging as the single greatest risk factor. But a small number of cases of Alzheimer’s are inherited, with a strong family history of Alzheimer’s developing much younger than usual (remember those people our clinic saw in their 40s?) We know some of those genes, so genetic testing can tell if you have one of them, and will definitely develop Alzheimer’s. Similarly, there are some cases of Fronto-Temporal Dementia, Parkinson’s disease and ALS that are familial. We know the gene that causes Huntington’s, so if you have that gene, you know the disease is in your future. While most of these diseases are rare, the nature of our clinic meant that we saw them all.
It was my job to work with families on how to adapt to the illness causing the dementia, and how to care for the affected family member while trying to maximize everyone’s quality of life. I therefore was privileged to share in their deliberations about what to do about genetic testing, if it was applicable. If you don’t have genetic testing, how do you make informed decisions? And if you do? How does it change your life to know you will get Huntington’s? How does it change your life to know you will not? Do you have survivor’s guilt instead of feeling relieved when you test negative and your siblings do not? Do you have children knowing they may end up losing you when they are very young, or be burdened with your care? Do you save your money for retirement or check off your bucket list on the assumption you will never retire? Does your employer find excuses to lay you off now, or does someone find an excuse not to hire you, although it might be many years before you develop symptoms? So many factors to consider!
The decision is a very personal one, with no right or wrong answer. But one factor, the worry that the results of genetic testing could be used to deny your application for insurance, or affect your work status, would be removed if Bill S-201 is passed. It will give Canadians the right to refuse to disclose whether they have had genetic testing, and the results of that testing, and would amend the Charter if Human Rights to include “genetic characteristics” as a prohibited ground for discrimination, just like race, religion and age. That would make a difficult decision a little easier.