Nunavut government mom-baby research scheme could breach privacy rights: report
GN says health study got “the proper authorization”
A surveillance project that gathers health information about all Nunavut mothers and babies from before birth up to age five could be highly invasive of personal privacy, Elaine Keenan Bengts, Nunavut’s privacy commissioner, said in her 2011-12 annual report, tabled last October in the Nunavut legislature.
The maternal and child health surveillance project, called Nutaqqavut “Our Children,” started gathering data on Nunavut mothers and babies in July 2011, prompting Keenan Bengts to say “health privacy legislation needs to be on the legislative agenda as soon as possible.”
“There are no real controls over how this information is utilized or how the use of the information might change in the future,” she said.
In the Government of Nunavut’s response to the report, tabled in the legislature March 13, the GN said “the use of personal information for this project did receive the proper authorization.”
That authorization refers to a section of the Access to Information and Protection of Privacy Act that states no personal information may be collected by, or for a public body unless it’s necessary for a proposed program and has been “authorized by the head with the approval of the executive council.”
The GN began work on the health surveillance project in 2007, and, “at that time, stakeholders were invited to take part in baseline meetings,” the response said.
The GN also said it is working on a “privacy impact assessment.”
In her report, Keenan Bengts stated there was no attempt to involve the privacy commissioner’s office in the consultation process leading to the implementation of health surveillance project.
“I was surprised to learn, through the press, about a health surveillance system in which all babies born in Nunavut and all mothers would be ‘followed’,” the commissioner said.
The health surveillance project was publicly announced only in July 2011, after a year of data collection had already occurred.
Also recorded in the collected data: social determinants of health such as low income, over-crowding, poor nutrition and the high cost of food.
Keenan Bengts said she understood and applauded the goal of the project — to see healthier children in Nunavut — but warned against privacy invasions.
“I have heard, anecdotally, about a number of troubling situations in which the health information of Nunavut residents has been improperly used or disclosed,” Keenan Bengts said.
The health surveillance project is only one small example of why health privacy issues are far more complicated than when dealing with other kinds of personal information, she noted.
That’s because health information can only be used “for the purpose it was collected,” according to the Access to Information and Protection of Privacy Act, Keenan Bengts said.
“There are some real questions about what that means and how far that can be stretched in terms of its use,” she said.
The commissioner’s report also touched on the absence of information for mothers about whether their information would be used for any purpose outside of the study.
Because Nunavut communities are so small, even without those “personal identifiers,” which the government promises to remove from the data before releasing it, people could easily identify the mothers and children “merely from facts and the community,” Keenan Bengts said.
Laura Arbour, a medical geneticist with the University of British Columbia, said only “population level” data would be released.
Geraldine Osborne, then Nunavut’s chief medical officer of health, said the database had the potential to improve the health status of mothers and children by giving health practitioners, for example, more insight into the links between a mother’s iron levels and an anemic baby.
In Nunavut, infant mortality is three times the national rate, sudden infant death syndrome occurs at six times the national rate, and birth defects occur twice as often, and the rate of premature births is also higher.