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Health

To know — or not: your medical history rights could soon vanish

A recent court decision forcing a woman to undergo tests against her wishes, to determine if she has Huntington’s Disease, could pose huge challenges to the basic principles of the Canadian medical system of consent and privacy, says Toronto health lawyer Elyse Sunshine.

The Alberta Court of Appeal upheld a lower court decision that requires the woman — who nearly died in a Calgary house fire and is suing her landlords for negligence — to undergo testing for the disease, the National Post reports.

A guest in the bungalow when it burned in January 2009, killing three others,  the woman can either disclose her genetic nature, drop the lawsuit, or  reduce her damages claim, the Post reports. Critics fear the testing will allow insurance companies and employers to discriminate against people who are merely at risk of genetic illnesses.

“People are fundamentally and legally entitled to determine how their personal health information will be collected, used and disclosed,” says Sunshine, partner at Rosen Sunshine LLP. “However, there are, in laws, exceptions to that general principle and a court order is one of them.

“When people start litigation, they sometimes don’t appreciate unanticipated consequences, such as a waiver of their privacy over their own health information.”

Sunshine says the potential impact of this case is “wide-reaching,” as it could provide “an opening for other defendants to use this type of information to impact on proceedings or even to discourage people from engaging in legal proceedings.”

With this precedent, the door is opened to force Canadians to undergo testing and to potentially find out information they may not want to know, says Sunshine.

“This development in the law shifts the onus on plaintiffs from disclosing the relevant information they know to undergoing tests to create new, potentially relevant information,” she says. “It may start with people who are involved in litigation: understandably, defendants who will have to pay awards of money based on the plaintiff’s estimated life expectancy will want to know if information exists that may reduce that life expectancy.”

It’s because of this factor that the court ordered the plaintiff in this case to undergo testing, Sunshine adds. And once defendants in litigation are able to require plaintiffs to undergo genetic testing, “it is conceivable that others, such as employers, insurance companies and banks, who have legitimate interests in knowing a person’s health risks, may try to require people to undergo tests to identify any risks which may exist.”

Individuals’ dearly held right to know —and to not know —what their medical future holds could soon be a thing of the past, says Sunshine.

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