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A Word from our Chair: Protection Against Genetic Discrimination Act

Jun 17, 2015 | A Word from Our Chair, CIJA Publications, Judaism

Photo (L-R): Alex Munter, CHEO  president and CEO, Dr. Christine Armour, CHEO researcher, Minister Peter McKay, Bev Heim-Myers, Canadian Coalition  for Genetic Fairness, Richard Marcea, CIJA

Photo (L-R): Alex Munter, CHEO president and CEO, Dr. Christine Armour, CHEO researcher, Minister Peter McKay, Bev Heim-Myers, Canadian Coalition for Genetic Fairness, Richard Marceau, CIJA

As you have read in previous updates, CIJA is playing an active role in the fight against genetic discrimination, in partnership with the Canadian Coalition for Genetic Fairness.

Research demonstrates that genetic markers indicating a predisposition to certain illnesses are disproportionately high among Jews, making discrimination based on genetic tests a significant concern for our community.

With this in mind, I am pleased to report that, on June 9th, Justice Minister Peter MacKay introduced Bill C-68, the Protection Against Genetic Discrimination Act. While this bill will not become law before the next federal election, it represents an important first step toward preventing genetic discrimination in Canada.

Canada remains the only G7 country without safeguards to prevent genetic discrimination. Given cross-party consensus on the issue at the federal level, we expect that the next government will quickly pass legislation comparable to Bill C-68 to ensure Canadians are finally protected.

Bill C-68 sends a clear signal that it is time for legislatures across Canada to tackle this growing problem. As a result of the division of powers in our constitution, there is a crucial role for the provinces to play. It is imperative that complementary legislation to prohibit genetic discrimination by insurance companies and employers be passed at the provincial level, independent of any federal initiatives.

Accordingly, CIJA’s regional offices will be working with local communities to advance this important issue with MPPs, MLAs and MNAs to ensure that the prevention of genetic discrimination is at the top of their legislative agendas.

Until such laws are in place, Canadians will remain vulnerable. Teresa Quick’s experience is illustrative.

Teresa’s mother took a genetic test that found a BRCA genetic mutation, indicating an increased predisposition for breast cancer. Many of you will be familiar with the BRCA marker, as it is disproportionately prevalent among Ashkenazi Jewish women. She hid this information from her daughters in fear of the discrimination they could face.

Teresa later got tested on her own initiative, and upon the discovery of the BRCA marker, underwent a pre-emptive double mastectomy that significantly lowered her cancer risk. She has subsequently been denied insurance coverage due to her BRCA test result.

Had Teresa’s BRCA marker remained a secret, there would be no risk of discrimination by employers or insurance companies, but her risk of developing cancer would be significantly higher. She is therefore penalized for responsibly and proactively seeking information and taking preventative action to ensure a better health outcome.

Teresa’s ordeal could be repeated for thousands in our community. We must make sure that no one in Canada has to choose between a potentially life-saving genetic test and employment or insurance.

As always, we welcome your feedback. Have you or someone you know been affected by genetic discrimination? Tell your story here.

– David J. Cape

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