Lorne Marin was born with Usher syndrome, a progressive disorder that leads to vision and hearing loss, as well as difficulty in maintaining balance.
He’s sensitive to the difficulties people with disabilities have to contend with, but a recent trend has made their lives even more difficult.
As genetic testing becomes more prevalent, employers and insurance companies are denying coverage to people with inherited predispositions to various illnesses. And that’s just wrong, Marin believes.
So on Oct. 27, Marin, a member of the Centre for Israel and Jewish Affairs’ (CIJA) task force on genetic discrimination, joined representatives of the Canadian Coalition for Genetic Fairness at a news conference at Queen’s Park to support Liberal MPP Mike Colle’s private members bill that would make genetic characteristics a prohibited ground of discrimination under the Ontario Human Rights Code.
“It has to come. The timing is right,” said Marin, who is legally blind. Jews of eastern European descent – Ashkenazi Jews – are disproportionately likely to inherit genetic markers associated with some major illnesses, including BRCA mutations linked to breast and ovarian cancer, he said.
Marin said fear of being denied a job or insurance coverage is preventing people from undergoing genetic testing, depriving them of the major benefit of early diagnosis. He’s even heard of a landlord who asked for genetic information before renting to a prospective tenant, he said.
Colle’s Bill 30 is meant to work at the provincial level in tandem with federal Bill S-201, which has been passed by the Senate and is now before the House of Commons. Colle’s bill, co-sponsored by Progressive Conservative MPP Sylvia Jones, will prohibit discrimination in connection with employment, insurance, the provision of goods and services, accommodations, contracts and membership in various organizations.
Colle said Canada is the only G7 country without a law prohibiting genetic discrimination. “The reason this is so pressing is that there’s a technological explosion that’s taken place over the last decades,” Colle said. In 2013, 2,000 genetic tests were available. Today, 33,000 tests are available.
While genetic testing can provide the basis for early medical intervention, Colle, too, noted that people are wary of doing so for fear of the information being used to deprive them and their children of employment or insurance. “This explosion require government action to prevent basic health information being used against them,” Colle said.
Karen Goldenberg, chair of CIJA’s genetic discrimination task force, said, “It is so un-Canadian for this to exist in our wonderful country. It is time for Canada to catch up with the science.”
The Jewish community, she continued, is particularly susceptible to various diseases of a genetic origin, including breast and ovarian cancers, which are linked to the mutation of the BRCA gene.
Bev Heim-Myers, chair of the Canadian Coalition for Genetic Fairness, which consists of 18 organizations, said that by 2008 when the global genome project was already under way, the United Kingdom, the EU, the United States and Israel all introduced legislation to protect genetic test information. Canada took “a wait-and-see approach,” she said.
Heim-Myers recounted several incidents that illustrated how employees have been affected by genetic discrimination. In one case, a 20-something web developer was let go after his boss learned he had the gene for Huntington disease, even though it wouldn’t affect him for 30 years. In another case, the grown children of a middle-aged man objected so strenuously when they learned their parent would be tested for dementia, they convinced him to forgo the test.
It’s the kind of thing Marin has seen all too frequently.
“People are afraid to go for genetic testing because of the fear of the consequences,” he said. “They decide to live in ignorance.”