Thank you for the question.
There is a coalition that has come together called the Canadian Coalition for Genetic Fairness, which you may have heard from. It is led by the Huntington Society. We are a member of that coalition. On how this arose, across Canada and all over the world there has been promotion of opportunities for people to have their DNA tested and have a report back about what they might be at risk for. I don't know if you've seen it in the papers. Full-page ads have been taken out. There's 23andMe, where you send them $25 and they send you back your whole genetic profile.
A number of issues arise from that. One of them is that when people receive the information, what are they supposed to do with it? It's advised that people have genetic counselling. If they may be at risk for certain conditions and have full genetic testing done, they should have the appropriate support to determine how best to use the information. That's one issue.
The second issue is I don't think people in Canada are aware that we do not have legislation to protect people once they receive that information. If you fill out an insurance form that asks you if you have had genetic testing and you answer yes, there is no legislation that protects you from not providing that information to them. They have every right to ask you what it said and to ask for the results. That can result in discrimination around insurance applications. Some professional individuals whose ancestors have had a history of Huntington's have been denied professional insurance because it's viewed as a high-risk genetic factor, for example. With Parkinson's, about 10% to 15% of people with Parkinson's—maybe more, given the information we've just heard—are affected by genetic.... Ted could speak more to this than I can.
So there is no legislation to protect people once they receive this information. Generally, companies doing this are private ventures to provide people with information that is supposed to identify if they're at risk for certain conditions. If you've seen the advertisement, it lists most of the neurological conditions, which is kind of surprising. On the other hand, when you get that information, what are you going to do with it? Secondly, once you have it you are at risk for having to declare it when you're asked. That implies employment situations. If an employer asks, you do not have the right to say no. You do not have the right to say you're not going to give it to them, and they have the right to not hire you. So it has enormous implications.
This coalition has come together and has been looking at amendments to the charter of human rights. They have put together a whole portfolio to make changes so individuals would be protected from having to declare that they've had genetic testing. They would then be protected from some of these issues around insurance, employment, or other opportunities.