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It is time to prevent genetic discrimination

Sep 26, 2016 | Publications

Via The Hill Times.

By SHIMON KOFFLER FOGEL

Monday, Sept. 26, 2016 12:00 AM

OTTAWA, ON — Genetic testing has the potential to be a lifeline for Canadians. From rare disorders to cancer, diagnostic and treatment options are developing at an exponential rate. What once seemed like science fiction is increasingly reality.

The barrier to maximizing the benefit of these advances is not scientific, it is legislative. Unless genetic information is protected, Canadians will be prevented from accessing the full potential of these breakthroughs. Bill S-201: An Act to Prohibit and Prevent Genetic Discrimination, will do just that.

Currently, Canada is the only G7 country without specific measures in place to protect genetic information. This means that Canadians could be forced to take genetic tests or disclose test results detailing their most personal information—their DNA. They could, in turn, be discriminated against because of their genes.

For example, Jewish Canadians of European descent are disproportionately likely to carry the BRCA genetic markers indicating an elevated risk of breast and ovarian cancers. The value of genetic screening for the BRCA marker has been likened to a mammogram, enabling affected women to take preventative steps to drastically reduce their cancer risk.

Unfortunately, women in the Jewish community too often refuse genetic testing due to fear of genetic discrimination. The example of a young lawyer who was advised by her physician to forego testing is illustrative. Her doctor warned that a positive test result for BRCA would preclude her from partnership in the law firm where she was employed. It could also limit access to the insurance required to establish her own practice.

This problem extends far beyond the Jewish community. Most Canadians are similarly susceptible, be they of Scandinavian, South Asian, African or First Nations descent. For example, recent research shows that the frequency of Long QT Syndrome, a genetic disease affecting the heart, is a shocking 20 times higher than average among certain First Nations communities in northern British Columbia.

Once the genetic marker for Long QT is detected, steps can be taken to eliminate the risk of catastrophic heart attack—the tragic fate of those who are not diagnosed. What’s more, findings indicate a connection between the Long QT marker and type 2 diabetes, a major health concern in First Nations communities. Parliament can harness the full potential of these medical breakthroughs by ensuring those who are tested do not fear or suffer from genetic discrimination.

The good news is that all federal political parties agree that genetic discrimination should be prevented. A former NDP health critic introduced a private member’s bill to address the issue in a previous parliament. The Conservative government introduced Bill C-68 before the 2015 election, during which representatives from all parties, including the Liberal Party President, committed to address the problem if their side formed the next government.

Preventing genetic discrimination has the potential to enhance the health of individuals and communities, and the integrity of our healthcare system. With billions of taxpayer dollars being wisely allocated to cutting-edge genetic research, the protections provided by Bill S-201 are essential to ensure a meaningful return on investment.

Critics of the bill make two arguments. First, they suggest the bill is unconstitutional because it impacts on employment and insurance—two areas of provincial jurisdiction. Second, they allege that protecting genetic information imposes a burden on the insurance industry that will be borne by Canadians in the form of higher premiums. These are red herrings.

Sensitive to the jurisdictional issue, the Senate sought input from the provinces before passing S-201. Ten of 13 provinces and territories responded. None raised any concern about constitutionality or suggested that genetic discrimination was beyond the scope of federal jurisdiction.

As professor Bruce Ryder noted in his testimony in the Senate, S-201 does not contain a licensing scheme or industry regulations. The prohibitions contained in the act apply to “any person,” not a particular industry or type of actor under provincial jurisdiction.

The purpose of S-201 is to address a significant social problem across Canada. In preventing genetic discrimination, Parliament would be encouraging Canadians to undergo genetic testing with tremendous, potentially lifesaving health benefits. This objective falls squarely within the federal domain.

In 2014, the privacy commissioner of Canada concluded that the “collection and use of existing genetic test results by insurance companies would not appear to be necessary for the legitimate business needs of the industry at the present time.” Privacy Commissioner Daniel Therrien reaffirmed this position in his testimony before the Senate this past February.

This is hardly surprising. Insurance sectors continue to thrive, without a spike in premiums, in other jurisdictions where measures to prevent genetic discrimination have been put in place.

The imperative to prevent genetic discrimination in Canada transcends the perceived needs of any business sector or special interest. It is absolutely necessary to protect the health and privacy of all Canadians. When it comes time to vote on Bill S-201, I encourage all Members of Parliament to stand up for their constituents and support of this important legislation on its merits.

Shimon Koffler Fogel is CEO of the Centre for Israel and Jewish Affairs, a member of the Canadian Coalition for Genetic Fairness.

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