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Genetic testing bill perpetuates myths and fears

The Senate recently passed Bill S-201, an act to prevent and prohibit genetic discrimination. The proposed law will now make its way to the House of Commons.

At first blush, this is wonderful news. Discrimination is a terrible thing and genetics are so powerful and personal.

But is "genetic discrimination" really that perversely pervasive? Are employers and insurers really using our genomic information in such an egregious fashion that an Act of Parliament is required to protect us?

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The proposed law, championed by Senator James Cowan and MP Robert Oliphant, has three principal aspects:

Create a Genetic Non-Discrimination Act, which would prohibit the requirement that genetic test results be disclosed as a condition of providing goods and services, namely health and life insurance;

Amend the Canada Labour Code to prevent employees from being required to take a genetic test or disclose results of a test to employers;

Amend the Canadian Human Rights Act to prohibit discrimination based on genetic characteristics.

The latter two points are not that controversial though, arguably, existing legislation – which prevents discrimination on the basis of race, national or ethnic origin, colour, religion, age, sex, sexual orientation, marital status, family status and disability – already covers genetics. After all, the implication here is that predisposition to some genetic condition would be a form of disability.

So let's focus on the insurance question, the area where the proposed law is most problematic.

To determine your eligibility, coverage and premiums, insurance companies discriminate in the technical sense of the term – meaning they recognize differences between individuals.

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To do this, they parse your medical history, your family history and current status (age, sex, occupation, weight, health habits) and assess your risk based on actuarial calculations. If you smoke, have high blood pressure or a history of breast cancer in your family, for example, your premiums will be higher, or you might be denied coverage.

Canadian insurance companies do not demand genetic tests. But, if genetic testing has been done, they can request that the results be disclosed. This is fair.

Yet, Canada's privacy watchdog has asked life- and health-insurance companies to "refrain from asking for existing test results" and Parliament is considering outlawing the practice. The fear of insurers is that a high-risk client – say, a person with a genetic predisposition to early breast cancer – could load up on life insurance. This is probably not a big problem, but the industry reaction to a ban would likely be to raise premiums for everyone.

The fear of those promoting the bill, such as the Canadian Coalition for Genetic Fairness, is that absence of legislation discourages people from getting genetic tests, and that could impede research and lead some people to delay getting diagnosed and treated.

In fact, this whole debate is not about genetics as much as it is about fear.

As Timothy Caulfield, the research director at the Health Law Institute at the University of Alberta, notes, there have been a lot of apocalyptic predictions about the evils of genetics: The decoding of the human genome (in 2003) has led to fears about designer babies, armies of clones and pervasive discrimination that creates a genetic underclass.

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We can now decode full human genomes for about $5,000, and we have data on more than 32,000 genetic predispositions. But the link between genes and disease/conditions has proved more complex than anyone imagined and the ethical issues far more nuanced.

"There is little evidence to support the idea that genetic discrimination is a big problem. If it does happen, it certainly doesn't happen on a scale that would classify it as a pressing policy dilemma," Prof. Caulfield writes in the online magazine, Policy Options. One of the principal arguments for a Canadian genetic non-discrimination law is that other countries such as the United States have one. But the U.S. legislation was designed principally to ensure people were not denied health insurance for essential medical care. In Canada, we have universal health care, and there is no genetic discrimination. Only supplementary health-insurance and life-insurance coverage are at issue, areas where "discrimination" is the norm.

The proposed legislation, however well-intentioned, sets up a number of straw men then ably slays them. Ultimately, what it does is perpetuate mythology

and unnecessary fears about the

power of genetics, and distracts us from more real and pressing civil rights and health-related injustices.

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