Privacy commissioner in Nunavut, Canada says government should release more data on tuberculosis

Nunavut’s privacy commissioner wants to see more transparency from the territorial government when it comes to tuberculosis cases.

Nunavut has had very high rates of tuberculosis (TB) compared to the rest of Canada for years. The bacterial disease spreads through the air from person to person, and though it can be cured with appropriate treatment, it can also be fatal — particularly if left untreated.

Finding out which demographic groups are most affected by TB in Nunavut has been a challenge, since the government only releases broad statistical information.

But earlier this month, Nunavut Information and Privacy Commissioner Graham Steele issued a report recommending the government change its policies on reporting TB cases and share more information with the public.

Steele began looking into this issue after a member of the public asked to see the statistics on TB cases in the territory broken down by community, age and gender. That person submitted the request to the Department of Health, which denied it — as has been their policy for over a decade, said Steele.

So the applicant turned to the privacy commissioner. Steele’s job was then to determine whether the government’s refusal to disclose the information was in keeping with the laws around access to information.

Concerns about stigma, identifying patients

When reviewing the case, Steele thought the applicant’s questions were relevant and important.

“They wanted to see the number of tuberculosis cases in each Nunavut community, and they asked to see that information [broken] down by age, to know — is it mostly affecting young people? Is it mostly affecting older people? And also by gender — you know, is it affecting more women than men?” he said.

The Department of Health had “two main arguments,” according to Steele, for not releasing the data.

He said the department worried about people with TB being identified from this more specific data — particularly if they live in smaller communities — and that releasing more data might add to the stigma around TB.

In the end, Steele decided “those two arguments don’t hold up to scrutiny,” though he agreed the goal of reducing stigma is important.

“You don’t want to do anything that has the potential to interfere with people pursuing tuberculosis treatment.”

Steele said there are ways to protect people with TB from being identified from the data set — and there would only be limited exceptions where a community is too small to do that properly, and then information would then need to be withheld.

Minister to consider recommendations

“Generally speaking, my conclusion was that the law requires that these statistics be released,” said Steele. “And I think perhaps we’re all better off if they are, because the whole idea behind access to information is that the people of the territory should have information held by government unless there’s a really good reason to hold it back — because, that way, you can have public discussion and debate about tuberculosis.

“And it’s really hard to do that if the government is keeping secret all the information, which is essentially what they’re doing now.”

Along with more data disclosure, Steele also recommended that the Department of Health consider a consultation process to explore how Inuit Qaujimajatuqangit and Inuit societal values can inform the department’s decision to release medical statistics going forward.

Under Nunavut laws, Steele’s recommendations are non-binding — Health Minister John Main has 30 days to decide whether to follow them or not.

Steele hopes Main will agree to make the data public.

“The government belongs to the people, and people have a right to know what their government is doing and why,” said Steele.

The Department of Health did not comment on the commissioner’s recommendation.

-With files from Meagan Deuling

Related stories from around the North: 

Canada: Eliminating tuberculosis among Canada’s Inuit stalled due to lack of funding, CBC News

United States: Coronavirus hurting Alaska attempt to reduce tuberculosis, The Associated Press