Researchers ask Inuit to re-consent to their health data being studied, 10 years on


Ten years ago, nearly 2,000 Inuit from Nunavut answered questions about their diet and lifestyle, and gave samples of their hair and blood to researchers — now researchers are asking those individuals to continue letting them use their information.

When a Canadian Coast Guard ship with doctors, nurses and health researchers travelled to all 25 Nunavut communities in 2007 and 2008, researchers asked participants in the health survey to consent to their data being used for 10 years.

Theresa Koonoo, with Nunavut’s Department of Health, says the researchers can continue to gain insight into Inuit health, if the individuals involved consent again to allowing their data to be studied.

If someone does not consent, their specific samples, which are being kept at McGill University in Montreal, will be removed from the collection and destroyed.

The health survey — Qanuipitali, in Inuktitut — was a partnership between the territorial government, the Inuit organization Nunavut Tunngavik Inc. and the university.


Health survey staff help passengers off a barge and onto the Arctic icebreaker Amundsen for health tests in 2007 near Pangnirtung, Nunavut. (Patricia Bell/CBC)

The files at McGill do not have personal information attached to them, so researchers cannot trace the samples back to a particular person.

When community liaison officers around the territory reach out to those involved in the study for their continued consent, the officers will not know anything about what the samples say about the person — they will just know that they participated.

Data used to promote health

The information collected in the survey helped inform smoking cessation initiatives and supported the creation of the Food Security Coalition.

Children screened were found to have low levels of vitamin D and iron, so the government distributed resources on how to handle iron deficiency to the communities.

Numerous studies were done to look at how diabetes and environmental contaminants were affecting Inuit.

If participants give their consent again, their data will continue to be used in studies like this for another eight years.

Koonoo says collecting new data is expensive, so at this time people who consent will not be involved in any new tests.

“We would love to have this health survey done again and we are hoping to do so in the near future,” Koonoo said.

The Department of Health said it’s interested in surveying the same people again in the future to see how the data has changed over time, as well as adding new participants.

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