Clash brewing over genetic privacy as insurance industry tries to get as much data as possible to assess risk
Ian MacLeod, Ottawa Citizen
OTTAWA — A clash over genetic privacy and the insurance industry’s need for personal medical data to calculate risk marked the opening day of parliamentary hearings on a Senate bill banning genetic discrimination.
No other generation in human history has had the power to so profoundly investigate and tinker with the essence of life and some believe there should be limits on what people and companies can do with the discoveries, products and knowledge flowing from the rapid commercialization of genetic science.
The Senate human rights committee Wednesday heard how the technology capable of tremendous healing and hope also can be used to discriminate against those found to carry genes that predispose them to potentially developing certain diseases.
“Fear of genetic discrimination is stopping many Canadians from having genetic testing that their doctors believe would benefit them,” said Sen. James Cowan, who is making his third attempt at sponsoring Bill S-201 into law. “In Canada, unlike most other western countries, there is no protection for this.”
The bill would outlaw life and health insurers and others from requiring that individuals undergo genetic testing as a condition of doing business. It would ban requiring a person to disclose previous genetic test results or penalizing those who refuse to undergo the test. And it would add genetic discrimination to the prohibitions in Canada Labour Code and federal human rights and privacy acts.
Life insurance, disability insurance, mortgages and employment would be prime areas of concern.
Bev Heim-Myers of the Canadian Coalition for Genetic Fairness told the committee a key problem is that the insurance industry places too much emphasis in the results of genetic tests, which often indicate a person’s genetic predisposition to developing a disease or condition, but not whether they will actually go on to get the disease.
“If a person has a genetic test and it (reveals) a perceived future disability, who knows if it’s going to happen. Perhaps it won’t,” she said. “But the insurance industry or employers are looking at it and saying this (disease) is going to happen. (That’s) not equal.”
She said people who suspect they’re prone to a disease, “will choose not to be tested because of the risk of being uninsurable,” and won’t know to seek medical therapy or make lifestyle or other changes to try to offset their genetic predisposition to a particular disease.
Although Cowan’s bill does not mention the insurance industry, a battery of insurance executives and actuarial experts lined up before the committee to complain the proposed legislation would unfairly blind insurers to the degree of risk they are underwriting.
They argued insurers and prospective policy holders have an obligation to disclose any relevant health information so the contract is entered into on an “equal information” basis. The same, they said, as people now do when disclosing family histories, cholesterol, hypertension, coronary heart disease, cancer, diabetes and other conditions with a genetic component.
“An essential element for insurance to work properly is an equal access to information by both parties,” said Jacques Y. Boudreau, chair of committee on genetic testing for the Canadian Life and Health Insurance Association. “That is why offers to purchase a house are often subject to inspection, or why the seller of a car must disclose any significant collisions.”
An essential element for insurance to work properly is an equal access to information by both parties
But the proposed law creates a material imbalance of information, he said. “Receiving a bad result from a genetic test would be a strong motivator to acquire more insurance. Under the bill, one would be able to acquire insurance at the same price as the general public and well below its true costs, providing a strong incentive to purchase as much as possible.”
He said the industry is “deeply concerned” that a “vast majority” of the public will have to pay more for insurance as a result.
If the bill makes it through the Senate, then House of Commons and into law, the executives hinted at a constitutional legal challenge over federal incursion into an area primarily regulated by the provinces, which have no such legislation.
Cowan first introduced the bill in early 2013, but it died when Parliament was prorogued. He retabled the bill, but it was gutted last spring by the Senate’s Conservative-dominated human rights committee.
Source: National Post