Five Questions for the man behind Canada’s Genetic Non-discrimination Act

Published: September 27th 2017

Well-known Halifax lawyer, Jim Cowan, retired from the Senate this year with a big feather in his cap: hard-won passage of the Genetic Non-discrimination Act.

In the world of Canadian genetics it is landmark legislation, and it took Cowan, a former Liberal leader of the Senate, four years and three dogged attempts to achieve it.

The American Society of Human Genetics took note, presenting Cowan and his battle-hardened ally, the Canadian Coalition of Genetic Fairness, with the society’s second annual advocacy award last year.

Royal assent was given to the legislation in May and it is now in effect.

The Genetic Non-discrimination Act makes it illegal for employers, insurance companies or anyone else to require an employee, client or customer, real or potential, to undergo genetic testing or divulge the results.

  • Individuals cannot be penalized for refusing genetic testing.
  • Collecting, disclosing or using genetic test results now require written permission from the individuals tested, although attending physicians, health care practitioners, and pharmacists are exempt, as are researchers.
  • Serious infractions are subject to fines not exceeding $1 million and/or prison terms no longer than five years, while lesser violations can generate fines as much as $300,000 and/or prison terms up to 12 months.
  • While all employees are protected under by the Act, amendments to the Canada Labour Code ensure a complaints procedure regarding the new protections is available to employees in federally regulated industries such as telecommunications, baking and transportation, while changes to the Canadian Human Rights Act make discrimination on the basis of genetic characteristics illegal in employment, housing and the provision of goods and services.

The new legal protection means Canadians can take advantage of genetic tests, now exploding in number, and benefit from proactive treatment without risking their jobs or adversely impacting their insurance or access to other goods and services.

It is already being credited with an anecdotal uptick in parental inquiries about genetic testing at Toronto’s Sick Kids Hospital. The legislation brings Canada into line with other G7 nations.

For all that, the legislation remains on shaky ground, because the government has signaled plans to refer the newly minted act to the Supreme Court of Canada to test its constitutionality.

Health insurance, regulation of contracts and provision of goods and services usually fall under provincial jurisdiction, and the federal justice minister maintains the legislation exceeds its authority by straying onto this provincial turf. Manitoba, British Columbia and Quebec have responded to the minister’s call to provinces and territories to register objections and reportedly will seek leave to intervene.

Strongest opposition to the legislation has come from the insurance industry, headed by the Canadian Life and Health Insurance Association. The industry prefers self-regulation.

To mark Cowan’s keynote address to the September Genomics and Health Seminar, which Genome Atlantic helps sponsor, we sent Cowan five questions about his recent legislative achievement in the Red Chamber.

Genome Atlantic: What made you persevere so long and so hard to get this law passed? Was there something personal behind your dedicated sponsorship of the bill?

The Hon. James Cowan Q.C.: The issue was first raised with me in 2012 by my Senior Policy Advisor, Barbara Kagedan, who had a close friend who tested positive for the BRCA 1 gene. Barbara found that unlike most other countries with which we like to compare ourselves, there was no protection in Canada against the use/misuse of one’s genetic information. This resonated with me because of my legal background and long-standing interest in scientific and medical research. Shortly afterwards, I was contacted by the Canadian Coalition for Genetic Fairness, and we resolved to take on the issue.

Genome Atlantic: Why do you think the federal government is so keen to get a reference from the Supreme Court of Canada on your legislation, when it rejected the idea for its legislation on medically assisted suicide?

James Cowan Q.C.: The Minister of Justice has been advised by her officials that the act intrudes into provincial jurisdiction and accordingly she announced that she would refer the issue of its constitutionality to the Supreme Court of Canada. To date she has not done so, but the Government of Quebec has announced that it will refer the issue to the Quebec Court of Appeal.

As you note the same Minister refused to refer the issue of the constitutionality of her MAID [Medical Assistance in Dying] legislation to the SCC despite the suggestion by me, and a number of other Senators that she do so. She provided no reason other than a referral as not necessary.

Genome Atlantic: Should Canadians be worried by insurance industry claims that the new legislation could eventually drive up term life insurance premiums by as much as 30 percent for men and 50 percent for women? Or by speculation that critical care insurance for some conditions might eventually become unavailable because people predisposed to particular genetic disorders have loaded up on coverage and distorted the market?

James Cowan Q.C.: In my view the claims /concerns expressed by the insurance industry are overblown. The drastic effects predicted by the industry have not occurred in any other country where similar legislative regimes have been put in place. The office of the Privacy Commissioner of Canada has conducted two separate studies concluding that this legislation would have minimal impact upon the life and health insurance markets in Canada.

Genome Atlantic: As a lawyer who has consulted constitutional experts on this issue, do you think the federal government has enough support and convincing arguments to overturn the legislation on constitutional grounds when it refers the legislation to the Supreme Court of Canada? If the federal government succeeds, do you anticipate seeing provincial legislatures taking up the cause?

James Cowan Q.C.: I am not a constitutional expert by any means but I have consulted with leading constitutional scholars who confirm–and have testified–that the provisions of the new Genetic Non-Discrimination Act are a valid exercise of the federal criminal law power. The overwhelming preponderance of evidence presented to the Senate and House committees supported that position. I accept their legal opinion and believe the legislation will withstand any constitutional challenge. On four separate occasions I, and the Senate and House committees, solicited the opinions of the provinces and territories. Not one expressed any concern. In fairness I would note the Minister of Justice and /or the life insurance industry did manage (at the 11th hour) to persuade three provinces to express concerns on jurisdictional grounds and as noted above in my answer to Question #2, the Quebec government has announced that it will refer the issue to the Quebec Court of Appeal.

I am unaware of any provincial or territorial government planning to introduce legislation on this issue. In my view there is broad support for a single pan-Canadian regime, rather than a patchwork of subnational ones.

Genome Atlantic: Presupposing your legislation withstands the federal government’s planned reference to the Supreme Court of Canada, where do you see the next genetics-related legal battleground shaping up this country?

James Cowan Q.C.: Genetics is seen by many to be the key to the future of precision or personalized medicine. The number of genetic tests has exploded – from 2000 when I first began working on this issue five years ago, to almost 53,000 today, and these relate to less than 5,200 of the 20,000-25,000 genes in the human genome. Gene editing (CRISPR) and gene therapy are realities not the stuff of science fiction. These new realities raise a whole host of legal, ethical and moral issues which demand the attention of politicians, scientists, ethicists and an engaged public.