Ottawa moves to stop genetic discrimination

Earlier this spring, I wrote a piece about the wild frontier of DIY genetic testing—a.k.a. Canada—and the paucity of laws here preventing discrimination based on genetic characteristics.

Today, as part of his extended au revoir from political life, federal Justice Minister Peter MacKay announced legislative amendments designed to close that gap. “It is important to have a framework in place to protect Canadians from genetic discrimination,” he said in a statement. “We see the need for this legislation, and we hope it will benefit many Canadians, today and in the future.”

If passed (and that’s a great, big “if” we’ll get to in a moment), the changes will affect three federal acts: the Canadian Human Rights Act, the Privacy Act and the Personal Information and Electronic Documents Act.

From MacKay’s backgrounder:

• The proposed amendment to the Canadian Human Rights Act would deem discrimination on the basis of a predisposition to a disability, as inferred from genetic test results, to be discrimination on the ground of disability. This Act applies to the federal government and First Nations governments, as well as to federally regulated businesses and industries, such as banks and telecommunications companies, in matters of employment and the provision of goods, services, facilities and accommodation.

• Proposed amendment to the Privacy Act and the Personal Information Protection and Electronic Documents Act (PIPEDA) would specify that information resulting from genetic testing is among the types of personal information protected by these Acts.

The Privacy Act protects personal information collected, used and disclosed by federal government institutions listed in the Act, as well as any parent Crown corporation and any wholly owned subsidiary within the meaning of section 83 of the Financial Administration Act.

The Personal Information Protection and Electronic Documents Act (PIPEDA) protects personal information that is collected, used and disclosed by private sector organizations in the course of commercial activities. It also protects information on employees who work for a federally regulated business.

A couple of things to bear in mind. First, it will be a minor miracle if these amendments are proclaimed. While by no means the most contentious legislation brought by the Tories, there’s a lot to weigh here, and Parliament is scheduled for its summer break in two weeks. We likely won’t get into a fall sitting before dissolution for an election, at which point, if unpassed, the changes will die on the order paper. Even if the Conservatives win, MacKay won’t be around to renew ownership of the issue.

Second, the real tension in this issue lies within provincially regulated spheres—namely, the insurance business and private sector employment. Insurers, critics note, are already asking policy applicants whether they’ve had DNA tests and, if so, to share at least some of the results. The fear is that someone with genetic predisposition to a disorder such as, say Alzheimer’s, won’t be able to get life or disability insurance, no matter how remote the chance he’ll develop the condition.

Similary, there’s concern that employers will seek access to their workers’ DNA information, and find ways to shed those who might someday cost them money in the form of leave, benefit claims or disability.

If the provinces deem these sort of things to be intrusions on civil rights or privacy, it’s up to them to change the rules. When I wrote my piece, they didn’t seem all that keen to do so. The Ontario government, in particular, acted as if it wished the whole thing would just go away.

So essentially, the feds are trying to lead by example. That’s good news, if you work in a federally regulated business, such as a radio station or a grain elevator. And MacKay has taken a less sweeping and punitive approach than the one taken in an unsuccessful private member’s bill launched in the Senate.

But this is just a start. The real battle over genetic discrimination is still to come.