Genetic discrimination bill faces tough test

While a bill to ensure genetic privacy rights may have passed the House of Commons on a unanimous vote at second reading, opposition members of Parliament are concerned that the government plans to gut the bill at committee after the government raised concerns over its constitutionality during debate.

Elizabeth Quigley says legislation by the federal government to combat potential genetic discrimination could mean the onus will be on doctors to redact genetic information when dealing with insurance companies.As the committee prepares to study the technical language of the bill, lawyers expressed concerns about the practicalities of how the law will work, and whether it will actually stop the abuse that it’s meant to protect the insured from.

“In my practice, what an insurance company normally does is send consent for the individual to sign to obtain information,” says Elizabeth Quigley, litigation counsel with Connolly Obagi LLP and an insurance law professor at the University of Ottawa. 

“Would this [new legislation] prohibit an insurance company from sending that blanket consent to get somebody’s family doctor’s records, because you know those genetic results would be in those records?”

Bill S-201, short-titled the genetic non-discrimination act, creates criminal offences with regard to genetic testing and protects the ability to refuse to undergo a test or to disclose the results under penalty of a fine not exceeding $1 million, imprisonment for a term not exceeding five years or both. The bill also adds genetic characteristics to the Canada Labour Code and the Canadian Human Rights Act.

Quigley wonders how the law would be interpreted, whether the consents would have to expressly exclude the genetic information or if it will be up to doctors to ensure that they redact that information because the consent hasn’t been specifically given for that genetic information.

“Should doctors be told how to address the genetic information in their files?” asks Quigley. 

“I can imagine inadvertent disclosure would be rampant.”

Quigley is also concerned about the section in the bill that says the prohibition doesn’t apply to “a physician, a pharmacist or any other health care practitioner in respect of an individual to whom they are providing health services.”

“In my line of practice, we usually talk about health-care practitioners who are treating people, but providing health services is such a broad term,” says Quigley. 

“Does it include people like insurer examiners or defence medicals and people who are not actually treating people? Could the information then get disclosed through the back door? 

“My insurance company can’t get that information, but if they hire a doctor to assess me, does that doctor then get to get that information indirectly because they’re excluded?”

Quigley says she “would have liked to rewrite this legislation to add some more protection for the individual, because the average individual is going to be asked to sign a generalized consent across the board.”

Federal Justice Minister Jody Wilson-Raybould says the bill is “an important step towards helping prevent genetic discrimination and protecting the privacy of Canadians.” 

She says, “The government is seeking amendments to the bill to ensure that federal legislation does not intrude in provincial areas of jurisdiction and to address certain policy concerns. 

“It is clear that federal action alone cannot ensure the protections that stakeholders are calling for,” she says. 

“For this reason, the government will engage the provinces and territories in discussions with a view to develop an effective and comprehensive strategy around the use of genetic information.”

Rob Oliphant, a Liberal MP who represents the riding of Don Valley West and is the bill’s sponsor in the House of Commons, says that in all of the time the bill has been debated both in the Senate and the House of Commons, no provincial government has expressed concern. Seven provincial governments wrote letters to that effect, some of them indicating outright support. 

However, federal New Democratic Party justice critic Murray Rankin, a former law professor at the University of Victoria, says he is concerned that those government amendments would limit the bill to the ability to make a complaint under the Canadian Human Rights Act and the sections dealing with the Canada Labour Code, taking out the sections that create the criminal offence. 

The use of criminal powers had been noted by constitutional scholar Peter Hogg as a mechanism to give the federal government jurisdiction in preventing discrimination.

“I think those are very valuable parts of the bill, and I’d be very disappointed if somehow the government thought that leaving it a shell would be doable,” says Rankin. 

The committee plans to hear witnesses over three meetings, starting Nov. 15.

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