Justice committee  Thank you.

Justice committee  I would say there are fewer examples with employers at this time, but employers now in Canada are looking to add genetic testing to their benefits packages. I had a call from a human resources individual asking me how they can teach their employers to understand genetic informati

Justice committee  With respect to the Huntington disease community, there is a genetic test for Huntington disease. There has been one since 1993, and fewer than 18% of people at risk will be tested for Huntington disease.

Justice committee  Absolutely.

Justice committee  I absolutely agree, and time is of the essence, because genetic information is quadrupling as we speak. Thirteen years ago, 100 genetic diseases had been identified. Now there are over 6,000, and there are over 33,000 genetic tests. This is going very quickly.

Justice committee  I'll give you an example. Two brothers in a family in their early twenties have long QT syndrome, a genetic heart disease, which means they could die very young from a heart attack. One brother is job hunting and the other brother isn't. One is tested for long QT and knows it is

Justice committee  If we don't have the overriding legislation and deterrent to genetic discrimination, then we will move forward with the provinces, and it will be similar to what has happened in the States. In the U.S., they have GINA, but that doesn't cover life insurance or disability insurance

Justice committee  I'm sorry, I don't have a statistic showing that genetic testing has gone up. I do know that the premiums in other countries have gone down, so the health and well-being of the community have gone up in different jurisdictions. It's the tie of being able to manage your health and

Justice committee  I'll choose that it's tied because people are taking more control of their health without fear.

Justice committee  It's very important for it to go into the Canadian Human Rights Act and the provincial human rights acts, but it's not a deterrent. It's not a deterrent to the behaviour of using genetic information against people. It's their personal private information, and if a person takes it

Justice committee  As far as I know, at this point in time, yes, it is.

Justice committee  If I understand correctly, you are asking if people are not getting genetic testing because they are worried for their family members. Is that right?

Justice committee  Yes. People are choosing not to get genetic testing because they are afraid that they will out their entire family. When you talk about a privacy issue with insurance—and it isn't just about insurance, but this an example to make it clear—if an individual has genetic testing and

Justice committee  If we have the genetic non-discrimination act, whereby you cannot use genetic test information against an individual, and it criminalizes the behaviour, that is the deterrent. That is the protection. If it's just in the Human Rights Act, it's not a deterrent, and people would be

Justice committee  Do you want me to start? I'm not a lawyer, so I'll put that on the table. I think it's critically important to change the Canadian Human Rights Act. We've worked with Justice since 2010, and they've been very onside with making the Canadian Human Rights Act more explicit, so th