Co-authored with Bev Heim-Myers, Chair, the Canadian Coalition for Genetic Fairness and CEO, Huntington Society of Canada
Protecting members of our society from discrimination based on the colour of their skin, ethnicity, or ancestry is a fundamental Canadian value. Unfortunately, Canadians across the country currently face real as well as potential future discrimination based on their DNA. Genetic discrimination is a reality in Canada, with out-dated laws enabling insurance companies and employers to target individuals and families based on the results of genetic testing.
To date, science has outpaced legislation in Canada, despite broad, multi-partisan consensus supporting action to stop genetic discrimination. Prime Minister Stephen Harper pledged to "prevent employers and insurance companies from discriminating against Canadians on the basis of genetic testing" in the last Speech from the Throne; an NDP Private Member's Bill has been introduced in the House of Commons to amend the Canadian Human Rights Act to prohibit genetic discrimination; and the Canadian Coalition for Genetic Fairness testified this week at the Senate human rights committee regarding Liberal Senator James Cowan's Bill S-201: An Act to Prohibit and Prevent Genetic Discrimination.
In the early 1990s when the Global Genome Project began, Canada joined other countries in a dialogue about its possible outcomes and the potential need for safeguarding genetic information. At the time, Canada opted to take a "wait and see" approach. Nearly 25 years have passed, and ours is now the only G7 nation that does not protect genetic information.
At the same time, Canada continues to invest billions in promising genome research, the benefits of which will be diminished and degraded due to the fear and reality of genetic discrimination. In his testimony before the Senate human right committee, Dr. Ronald Cohn, Co-Director of the Centre for Genetic Medicine and Senior Scientist at the Hospital for Sick Children, noted that 33 per cent of families refused to participate in a study that could have life changing diagnostic implications for their seriously ill children, citing genetic discrimination. With research increasingly making it possible for prevention, early detection, and treatment of many diseases, genetic discrimination by insurers and employers is a barrier to the future wellbeing of every Canadian.
Genetic testing can provide diagnostic precision and more effective treatment of illness, saving lives and ultimately reducing healthcare costs. Tragically, patients all too often face a dreadful dilemma: undergo testing that could prolong and improve the quality of their lives but would make them vulnerable to discrimination, or refrain from testing and take their chances.
The case of two brothers in their twenties at risk for Long QT, a genetic mutation leading to a sudden, fatal heart attack, is illustrative. One was tested, has the mutation, will be treated, and will accordingly not die of a massive heart attack. He will also not qualify for life insurance. The other brother was in the middle of a job search and refused to get a genetic test for fear of employers finding out. He will be able to access life insurance.
Who wins in this scenario when the untested, insured brother dies at 40 years of age leaving behind a wife and young children? Does it really make sense that an employer can't inquire about a person's marital status, but can have access to private genetic information?
Genetic discrimination is not just an issue affecting groups of people susceptible to certain diseases. Various ethnic communities are, in some respects, just as vulnerable. For example, Jewish Canadians disproportionately carry genetic markers suggesting increased predisposition to certain types of cancer. Testing for this information, free from threat of discrimination, is vital for improving health outcomes and saving lives.
Genetic information is sensitive, complicated, and requires a high degree of protection. Failing to safeguard genetic test information and allowing insurers and employers to use an individual's most personal genetic data against them will have lasting consequences for the health and wellbeing of all Canadians. It is time for the law to catch up with science and ensure an end to genetic discrimination in Canada.
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