Genetic testing and privacy
Genetic testing can save lives. So, why isn’t everyone getting it done? It turns out that companies are using the information from the tests to discriminate against applicants.
While this is by no means a Jewish-specific issue, the National Council of Jewish Women of Canada (NCJWC) and the Centre for Israel and Jewish Affairs (CIJA) are taking the lead in urging the federal government to legislate against this discriminatory practice.
“At NCJWC, our goals are for education, service and social action,” said Sharon Allentuck, the organization’s national president. “Social action includes writing to MPs, senators and the prime minister … [about] genetic testing and insurance denial.”
Genetic testing has been high on NCJWC’s list of priorities for the past 25 to 30 years and it continues to be – not just with respect to concerns over insurance companies’ actions, but also to increase public awareness of the importance of genetic testing.
In Winnipeg, for example, a clinic is held every three to four years in conjunction with Health Sciences Centre geneticist Dr. Cheryl Greenberg. While, in the past, the main focus was on Tay-Sachs, the list keeps getting larger, as geneticists like Greenberg discover new gene connections. At the moment, the list stands at seven to eight different Jewish genetic diseases being studied.
By getting a test done, one can be aware of a possible genetic problem that might affect oneself or one’s children, if a person has children with another carrier of the same disease. This knowledge can provide people with peace of mind when choosing a partner.
So far, though, this knowledge has come with a cost. When people apply for insurance, they are asked to disclose the results of their genetic testing.
“It came to our attention that insurance companies said to some people, ‘You’ve been tested, genetically. You have certain predispositions. Sorry, but we’re going to deny you insurance,’” said Allentuck. “It’s against human rights, it’s discriminatory. Canada is the only G7 country that allows this to happen. And so, legislation [Bill S-201] preventing that discrimination was passed through the Senate and now it’s in the House of Commons. We are asking our members and are working with CIJA to encourage [Jewish community] members to contact their members of Parliament to ensure the legislation passes.”
CIJA adds on its website, “We encourage provincial legislatures to pass complementary legislation, with a specific focus on employment and insurance.”
For more information, visit NCJWC’s website or Facebook page. Allentuck encouraged readers to become NCJWC Facebook friends in order to stay regularly updated on this and other important topics.
“This isn’t a Jewish issue,” she said. “But that doesn’t mean that Jewish people can’t have a say in it.”
Rebeca Kuropatwa is a Winnipeg freelance writer.