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Sign or else: Consent form deadline looms next month

Critics say NIHB form violates privacy rights as well as Nunavut land claim agreement

JIM BELL

This is the cover of the brochure, available in English and French only, that Health Canada is sending out to explain why they want Inuit and First Nations people to sign away their privacy rights to receive NIHB-funded health care.

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Inuit patients in Nunavut have less than five weeks to sign a mandatory form surrendering their right to medical privacy, or run the risk of being denied essential medical care.

Called the "NIHB Program Consent Form," the document gives Health Canada bureaucrats — and numerous Health Canada agents and contractors — permission to look at sensitive personal information contained in medical files.

"The whole process is unpalatable, and I believe it does infringe on the privacy rights of those individuals who are being required to sign them," said Elaine Keenan-Bengts, Nunavut's information and privacy commissioner, in an interview this week.

Keenan-Bengts has no jurisdiction over Health Canada or any other federal agency. Her job is to act as a watchdog over territorial governments only, to make sure they do not abuse personal information stored in territorial government filing cabinets and electronic databases.

But as a privacy rights expert, she's convinced that the NIHB consent form violates privacy rights, and that her fellow privacy and information commissioners across the country share this view.

All aboriginal people in Canada eligible for health care benefits under the NIHB program, including Inuit and First Nations, must sign the form. In Nunavut, the deadline is September 2003.

Those who don't sign it may be denied NIHB benefits. In Nunavut, that could amount to a denial of basic medical care. Those who choose not to sign the form can pay for the services out-of-pocket, but most Inuit can't afford the enormous cost of the services the NIHB pays for.

In Nunavut, it's the NIHB that pays for patient air fares, prescription drugs, dental care and vision care.

Keenan-Bengts says the worst part of the scheme may be the enormous pressure placed on Inuit clients who may be denied medical care, especially essential medical travel, if they do not sign the forms.

"It's not freely given. It's not given with a full understanding of the consequences, and it's clearly a violation of privacy. I mean, who knows what this information might be used for?" Keenan-Bengts said.

A staff member at the Office of the Privacy Commissioner of Canada said this week that they have received "a number of complaints" about the Health Canada consent forms.

The staff member, who did not wish to be identified, could not say whether those complaints were made by organizations or individuals, and could not comment further.

Opposition to the consent forms among Nunavut and Inuit leaders has been sporadic and uncoordinated.

The latest organization to denounce the plan is the Qikiqtani Inuit Association.

In a letter to Anne McLellan, the federal health minister, signed by Thomasie Alikatuktuk, QIA's president, QIA lists six legal objections to the NIHB consent forms:

• The consent form violates Inuit privacy rights.
• The consent form violates the federal government's fiduciary obligations to Inuit by attaching a condition to the provision of essential health care benefits.
• The consent form violates Article 32 of the Nunavut land claim agreement.
• The consent requirement is an illegal "seizure" of personal medical information under section 8 of the Charter of Rights and Freedoms.
• The "consent" obtained by signing the form is not given freely or voluntarily, and is therefore legally invalid.
• The consent form discriminates against Inuit, because other Canadians do not have to sign such a form to get essential medical services.

QIA is asking that the NIHB consent program "be discontinued immediately." As of Nunatsiaq News press-time this week, QIA's president, executive director, and director of social policy were all on annual leave and could not be reached for comment.

In Nunavut, nursing station staff have been stuck with the job of handing out the consent forms — which are written in English and French only - and getting people to sign them.

That means it's not only Inuit patients who may not understand the privacy rights that Health Canada is asking them to sign away. Health centre staff, whose expertise is health care, not privacy law, may not understand the process either.

"In a place like Nunavut, where educational levels are lower, where there are language barriers, significant language barriers, they can't have even read them in their own language," Keenan-Bengts said.

Ed Picco, Nunavut's health minister, slammed the consent form plan in a statement this past May.

"The nurses and medical staff in Nunavut are trained and paid to deliver medical services. It is inappropriate to ask them to become paper pushers generating more federal red tape, or to create new barriers for Nunavummiut looking to receive medical services," Picco said.

In its defence, Health Canada claims the consent forms are legal under the federal Privacy Act. Health Canada also says that private insurance companies commonly require clients to sign similar consent forms.

But Keenan-Bengts says she thinks that's a weak argument.

"You've got to look at the wording. What the Government of Canada is asking aboriginal people to sign is a blanket consent. I haven't looked at the private insurers' consent forms, but I suspect they're not that blanket. The consent form issued by the federal government doesn't even limit the information to medical purposes." she said.

As for the Inuit Tapiriit Kanatami, last March it issued a statement advising Inuit not to sign the forms, and asking that information about the forms be removed from public view.

ITK also said it was trying to work out an agreement with Health Canada to protect Inuit health information.

But no such agreement has been reached, and Health Canada has rolled out the program anyway, with a deadline of September 2003 for Nunavut.

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