Genetic discrimination is now outlawed in Canada.
Gosh, that sounds wonderful, and virtuous. But, practically, what does it mean?
Bill S-201, an Act to Prohibit and Prevent Genetic Discrimination, adopted by Parliament on Wednesday night, requires the government to do three things: 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; and 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 already protects workers because, presumably, predisposition to a genetic condition is a form of disability.
Read more: Why we need a law to prevent genetic discrimination
There is also very little evidence that this kind of discrimination exists, that employers are firing people (or not hiring them) because they have a predisposition to breast cancer. (Women with the BRCA1/2 genes, for example, are about five times as likely to develop breast cancer.)
The United States, which has had this sort of legislation since 2008, the Genetic Information Nondiscrimination Act (GINA), sees only about 300 cases a year, and almost all them involve denial of basic health coverage. In Canada, we have universal public health coverage, so that is not much of an issue.
So let's turn to the Genetic Non-Discrimination Act, which would forbid insurers from using genetic information to determine the cost of health and life-insurance policies. (The U.S. law, GENA, does not apply to life insurance.)
That provision may be unconstitutional because it appears to be a federal intrusion into a field of provincial responsibility – but let's leave that one for the constitutional scholars and courts to hash out.
The real problem is that however well-intentioned the law may be, it is illogical.
Health and life-insurance companies are a business – a big, profitable business. About 28 million Canadians have private health and life insurance, and they pay about $58.4-billion in premiums annually.
In determining premiums, companies openly discriminate. They classify people into risk categories and charge them different premiums.
Insurers arrive at these calculations using actuarial tables based on your individual medical history, family history and current status (age, sex, occupation.) If you smoke, have high blood pressure or a family history of breast cancer, your premiums will be higher or, in some cases, you might be denied coverage.
You will be discriminated against, law or no law.
The Canadian Life and Health Insurance Association currently has a voluntary code that says insurers will not demand genetic tests but, if testing has already been done, the results should be disclosed if the application is for $250,000 or more. This seems fair. (About 85 per cent of policies in Canada are for less than $250,000.)
The CLHIA warns that the law will result in significant hikes in premiums – about 30 per cent more for men and 50 per cent more for women.
This may or may not be fear-mongering. You may or may not trust the insurance industry. That doesn't matter.
What this law is trying to do, in a backhanded fashion, is ensure everyone can purchase a basic amount of life insurance, and supplemental health insurance.
If that is the policy goal, then state so explicitly. If the government (or its backbenchers and opposition) believes supplemental health and life insurance is a social good, then act accordingly.
Genetic testing has a lot of potential. It even has some real, practical benefits such as helping personalize care (for example, letting you know, in advance, if you will respond well to some cancer drugs) and advancing research, particularly on rare disorders.
This law sends the message that we should fear genetic testing. We should not; we should embrace it.
In fact, the ultimate solution to this genetic discrimination dilemma would be to test everyone, to decode the genome of every child at birth, instead of testing for a couple of dozen conditions as we now do.
If you level the playing field, you will not eliminate the kind of discrimination that insurers practice altogether, but you will make the actuarial calculations and the pooling of risk more precise.