The increasing sophistication of genetic testing brings with it the promise of a medical utopia.

Anyone can get tested to see if they’re at risk for certain kinds of illnesses; to be forewarned is to be forearmed.

But the absence of a law against genetic discrimination means Canadians run the risk of living in a dystopian future instead.

Right now, anyone making use of genetic testing can be obliged to disclose what they find — and Canadians have already been fired, denied insurance or forced to pay hefty premiums as a result.

Senator James Cowan wants to change that; he has tabled a bill that will make genetic discrimination illegal.

“There’s nothing more private than your genetic makeup,” Senator Cowan said.
“You should be entitled to decide for yourself in what circumstances you would release it and to whom.”

Bill S-201 — called An Act to Prohibit and Prevent Genetic Discrimination — has been a long time coming. Senator Cowan first tabled legislation to prevent genetic discrimination in April 2013, but it died on the order paper when Parliament was prorogued.

"I was determined that I was going to deal with it regardless,” Senator Cowan said.

Perverse incentives

Picture two cousins.

One of them gets genetic testing and finds that she has a predisposition to heart disease. Aghast, she stops smoking, starts exercising and improves her diet.

Her cousin, meanwhile, never gets tested and continues to live an unhealthy lifestyle.

It seems obvious that the first cousin’s choices are better, and not just for the sake of her own health — Canadian taxpayers are less likely to be on the hook for pricey medical treatment down the line.

But the legislative vacuum around genetic discrimination means the cousin who did get tested may have to pay steep insurance premiums, if she can even get insurance at all.

Meanwhile her cousin lives a comparatively carefree life — until her lifestyle and genes conspire to bring her down.

“At 45 you drop dead. The insurance company’s got to pay out,” Senator Cowan said.
“Where’s the public good?”

The Bill

At its heart, the bill is straightforward.

It would prohibit anyone providing goods or services, or entering into a contract with someone, from requiring that person to take a genetic test or disclose the results of a genetic test.

The bill would also prevent the collection, use or disclosure of test results without written consent.

The penalties would be harsh — fines of up to $1 million or five years in prison.

While people alleging genetic discrimination can already pursue human rights or privacy claims, the new law would shift the cost of legal action to the state, and away from the complainant.

Any legal relief available now pits individuals against serious money.

“They’re up against somebody with very deep pockets who basically wears them down,” Senator Cowan said.

Prosecution, he hopes, will be a last resort; the bill is designed to prevent discrimination from happening by dissuading employers or insurance companies, for instance, from even asking about genetic testing.

With good reason. The results of most tests aren’t determinative — a predisposition to cancer doesn’t mean an individual will actually get cancer, particularly if that person makes lifestyle changes.

The Opposition

Insurance companies have been the most vocal opponents of the bill but Senator Cowan emphasized that he is not singling them out.

“This is not about targeting the insurance industry or any other industry,” he said. “It is about targeting inappropriate behaviour — whoever engages in that behaviour.”

Some Senate colleagues also wondered if the bill, with its healthcare and insurance implications, encroached into provincial jurisdiction.

But Senator Cowan said prohibiting discriminatory behaviour is entirely within the federal government’s purview; in any case, the provinces and territories have been asked to comment on the bill and thus far there have been no objections.

“Our view is the provinces are waiting for federal legislative action in this area, and they may or may not follow it up with … complementary legislation,” Senator Cowan said. “If you leave it to the provinces, you’ll end up with some provinces doing nothing and the remaining provinces doing things that aren’t the same. So you end up with a patchwork of protection.

“If you care about this issue, you would want to have the same protection, regardless of where you live in the country.”

The Victim

On January 27, 2016, Senator Cowan rose in the Red Chamber for the second reading of Bill S-201.

He told the story of a young man, just 24, who knew Huntington disease ran in his family.

It is a debilitating condition — the body seizes up to the point that even swallowing requires a Herculean effort — and after much agonizing, the man decided to get tested.

He also told his employer.

“His employer asked what the results were, and the young man answered honestly,” Senator Cowan told the chamber. “On Monday, he went into work and was fired. He was a video editor. The employer said he was afraid for his equipment.”

The man doesn’t have the disease now and it is unlikely to develop for decades. Moreover, advances in medical science may delay onset even further or perhaps lead to a cure.

“But he is being discriminated against now because of his genes,” Senator Cowan said. “This happened eight months ago, and it's wrong.

“This should not happen, not anywhere — but certainly not in Canada.”

The Way Forward

The third reading of Bill S-201 in the Senate is expected to take place in April. If it passes, the bill will go to the House of Commons for Members of Parliament to consider it.

Senator Cowan is optimistic his bill will pass.

“I think there’s stronger support for it now. There’s more awareness in the public. More and more people are speaking out on this,” he said.

Meanwhile, Canadians across the countries are justifiably fearful of the consequences of trying to learn more about their own health.

Senator Cowan said robust protection against genetic discrimination and its benefits to Canadians at large far outweigh any minor adverse effects insurance companies might experience.

“I would come down on the side of the privacy rights and the legitimate interests of ordinary Canadians,” he said.

“The science and public opinion is way ahead of where we are as legislators.

“I think it’s a shame. It’s wrong — it’s criminal — that we don’t have some sort of protection in Canada.”