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Physicians and patient advocacy groups say they support a proposed change to the Ontario Human Rights Code aimed at protecting people’s genetic information from being used by insurance companies and employers.MONIKA WISNIEWSKA

Canada's privacy watchdog says it wants to stop the insurance industry from using genetic test results when underwriting insurance policies, intensifying the debate over who should have access to such personal health information.

The Office of the Privacy Commissioner of Canada (OPC) is calling on the life and health insurance industry to put a voluntary ban on insurers asking clients for access to existing genetic test results until they can show the information is necessary and effective for actuarial purposes. Insurers already have a voluntary ban in place against asking applicants or existing policy holders to undergo genetic testing.

"In effect, the industry's current position is that applicants should hand over all genetic test results and let the insurance actuaries determine what is material or not," said Patricia Kosseim, senior general counsel at OPC. "And we're saying that by our federal private-sector law standards, insurance companies should not be collecting this information in the first place, if it's not necessary and effective in assessing actuarial risk." OPC research shows banning the use of genetic test results by the insurance industry won't have a significant effect on companies or insurance markets.

The OPC's message has been aimed mainly at the Canadian Life and Health Insurance Association Inc. (CLHIA) which argued insurers need the medical information to accurately assess the risk profile of potential clients.

"Some of these tests – as time goes on, and now – are important indicators with respect to risk," said Frank Zinatelli, general counsel of the CLHIA. "So yes, we feel it's important to be able to have access to those types of information."

The issue has come to light as genetic testing has become quicker, more affordable and easier to get. Canadians are increasingly undergoing genetic testing for reproductive planning, to investigate their ancestry or to determine a genetic predisposition to diseases such as cancer, among other things.

The disclosure of test results could dissuade people from undergoing screening for "potentially life-threatening diseases," the OPC said. Another risk is that people will be too fearful to participate in large research studies that involve genetic testing.

"The purpose there isn't to diagnose – it's to look for trends over billions of data points," Ms. Kosseim said. "It's the chill factor we worry about."

The OPC said the categories of testing that would actually be helpful for underwriting are too limited to be of financial consequence.

"When you consider it from an insurance perspective of shared risk, and pooled risk, they're not likely to make an ultimate difference to the bottom lines of companies," Ms. Kosseim said. If technology improves enough to do testing on more complex disorders, then the OPC would revisit the issue, she said.

Mr. Zinatelli disagrees. "We think it's the wrong way to go, and I certainly think we'll be having further discussions with the Privacy Commissioner," he said. He added that the moratorium on requesting genetic tests to qualify for life insurance has been in place for more than a decade. He said the industry has always been in "complete agreement" about the ban, but opposes extending it.

Insurers have long sought "information of a genetic nature" in their applications for polices, the CLHIA notes. New customers routinely disclose family history, cholesterol levels and other diseases such as cancer and diabetes that can have a genetic component.

The dispute is playing out against a backdrop of federal and provincial discussion about genetic testing and human rights.

In October last year, public bill S-201 was introduced to the Senate with the aim to "prohibit and prevent genetic discrimination," and limit the insurers access to the information. Many other countries have measures in place to protect genetic information, including the U.S., which signed the Genetic Information Nondiscrimination Act into law in 2008. The federal government also promised in its last throne speech that it would "prevent employers and insurance companies from discriminating against Canadians on the basis of genetic testing."

The OPC was encouraged by these initiatives, but said its statement is based on how Canada's current privacy laws apply right now.