Guard privacy of genetic profile
The Canadian Human Rights Act makes it an offence to discriminate against anyone on the grounds of race, colour, religion and sexual orientation, among other prohibitions. But there is one protection that is not afforded by the statute — control of your genetic profile.
There are privacy laws in most provinces, B.C. among them, that ban employers from demanding a job applicant’s DNA makeup. But the situation is less clear when it comes to life insurance.
It appears some insurance firms ask potential clients who’ve had genetic testing to hand over their results. They focus particularly on hereditary disorders such as some forms of breast cancer, Alzheimer’s and Huntington’s disease. Twenty per cent of individuals at risk of contracting Huntington’s say they’ve been pressed to reveal their DNA test results.
This is no simple issue. There are arguments on both sides.
Insurance companies make the case that they need this information to survive. People who have learned they might face a life-threatening ailment are much more likely to seek insurance. That distorts the risk pool.
On the other hand, if people with a family history of such disorders are forced to reveal their results, they are less likely to be tested. And this has serious implications, both for the individual and family members. Life-saving or life-extending treatments might be delayed in such circumstances.
What should settle the matter is that there are not dozens, but thousands of genetic diseases. If we permit inquisitive parties to seek test results across so wide a spectrum, patient privacy is effectively ended.
And this might happen. As it becomes possible to predict future disease risks, there will be pressure for access to this information. Such knowledge is not easily kept secret.
One possible solution is being debated in Parliament. The House of Commons has taken up a bill that already cleared the Senate.
The legislation would make it illegal to require anyone to undergo a genetic test or disclose the results, as a condition of employment or provision of a service. Exceptions are permitted, with appropriate safeguards, for healthcare providers and researchers.
The bill also amends both the Canada Labour Code and the Canadian Human Rights Act, to prohibit discrimination on the basis of genetic characteristics.
If the legislation passes, it would become a criminal offence to engage in such discrimination. That’s a considerable strengthening of the current legal framework, in which discriminatory behaviour is merely a regulatory offence, with much less serious implications.
It also makes it easier for victims to gain redress. At present, they have to file a complaint with a human-rights tribunal and argue their case against a defendant who almost certainly has deeper pockets. Under criminal law, Crown counsel would prosecute the case.
We’re calling this a “possible” solution, because what a current Parliament can give, a future Parliament can take away. The ideal answer would have been to entrench this protection in the Charter of Rights and Freedoms. Realistically, however, that won’t happen any time soon, as the formula for amending the charter is enormously challenging.
There is also the concern that, to date, the federal cabinet has not said definitely whether it will support the bill. There are concerns that any such legislation would intrude on provincial jurisdiction.
Genetic testing is still in its infancy. It will take years for the full extent of this technology — and the issues it raises — to make itself felt.
Yet that day will come. And when it does, what is obscure or unknowable about our future lives will become much clearer. We will, in a sense, become an open book, at least health-wise.
For this reason alone, it makes sense to limit who reads that book.