September 5, 2016: Tell your MP how important it is to prohibit genetic discrimination in Canada

By Michael Regenstreif

The House of Commons is scheduled to resume sitting on September 19, and one of the pieces of legislation expected to be on the fall agenda is Bill S-201: An Act to Prohibit and Prevent Genetic Discrimination – a bill that was originally put forward by Liberal Senator James Cowan in 2013.

The Centre for Israel and Jewish Affairs (CIJA) is encouraging members of Canada’s Jewish community to write to their members of Parliament to encourage their support for the bill and ensure its passage.

As CIJA Chair David Cape points out in an August 25 email to the community, “Canada is the only G7 country without specific protections in place to prevent discrimination based on DNA.”

This is a matter that should be of serious concern to all Canadians. As Cape points out, when we are without a law protecting us from genetic discrimination, there is nothing to prevent such bodies as insurance companies, employers (and potential employers) from demanding individuals take genetic tests and disclose private information to them.

“This poses serious problems when it comes to finding or keeping a job, advancing in a career, or buying insurance,” Cape notes.

And this is a matter that is specifically of concern to the Jewish community as there are a number of genetic diseases that are much more prevalent among Ashkenazi Jews than in the general population. These include Gaucher disease, cystic fibrosis, Tay-Sachs disease, familial dysautonomia, and Canavan disease.

A genetic condition that runs in my own family is hereditary angioedema – a condition that can cause swelling, sometimes very painful swelling – in almost any part of the body at almost any time. My great-grandmother, grandfather and father all had it and there was a 50 per cent chance that I would have it. Luckily, I don’t. But one of my brothers does, as do a number of my cousins.

As well, I know many Jewish individuals who suffer from Crohn’s disease, for which Ashkenazi Jews have a higher genetic disposition than the general population.

And there is a too-long list of other genetic diseases – some of them, like hereditary angioedema, that are quite rare – affecting Ashkenazi Jews in much higher proportions than other communities.

Genetic testing can help individuals at risk for these diseases manage their health. However, without a law protecting them from the types of genetic discrimination I’ve mentioned, many people are afraid that being tested and testing positive would put their livelihood or ability to be insured at risk. So too many people avoid being tested at all and don’t receive the help or knowledge they need.

It is unacceptable that Canada remains the only G7 country that has not yet enacted protection from genetic discrimination. Contact your MP and let them know how important it is that Bill S-201 be passed as soon as possible.