Bioethics Forum Essay
Canada Confronts its Own “Tuskegee” Studies
Last summer’s revelations that malnourished Aboriginals in Canada served as unwitting and unprotected subjects in nutritional experiments in the 1940s and 1950s brought a sharp reaction–though the research took place decades ago, the pain in Canada’s First Nations communities was fresh. First Nations chiefs signed an emergency resolution demanding that the government release all information about the research, Aboriginal advocates rallied in 12 cities (here and here) to push for the information, and Canadian bioethicists compared the nutrition studies to the Tuskegee syphilis study. Four months later the story is off the front pages, but it continues to unfold.
Ian Mosby, a young historian of science focusing on food history at the University of Guelph in Ontario, dug into publicly accessible archives to piece together the story of government-sponsored experiments and had no qualms about calling it unethical, writing that some of the studies were “largely made possible because of access to a population of chronically malnourished and vulnerable children who, as wards of the state, had little say in whether or not they participated in the study.”
The research began in 1942, when a team of physicians and bureaucrats traveled “by bush plane and dog sled” to reserves in Northern Manitoba, where they documented hunger and interviewed chiefs to understand the conditions causing it. The most experienced nutritionist on the trip was an American, H.D. Kruse, an administrator for the New York-based Milbank Memorial Fund, which was cosponsoring the trip. (As an interesting footnote, the same organization provided ongoing support to the Tuskegee Study over the course of nearly 40 years.) A study doctor reported that people on the reserves “were almost starved,” but the team did not arrange for increased food rations; instead, they designed a controlled study of nutritional supplements, such as thiamine or ascorbic acid. They gave supplements to 125 adults, while 175 others served as controls, with both groups undergoing detailed physical and eye examinations.
At the time, Canada forced Aboriginal families to send their children to the now disgraced “residential schools” run by the government and the churches. With the Manitoba study laying the groundwork, the nutrition researchers organized studies at residential schools across the country in a project that ran from 1948 to 1952 and eventually involved more than 1,000 children. Once again, the researchers did not address the malnourishment they found.
At a school in Nova Scotia, for example, children were getting less than half of the amount of milk recommended for Canadian children at the time. The researchers designed a study that involved conducting physical exams on the children for two years to establish a “baseline,” and only then increasing the amount of milk and following the students for three more years. At another school they tested vitamin C supplements. Since dental services might interfere with the effects of supplements on the gums and teeth, the scientists blocked certain types of dental care for children in the study schools, depriving them of services that other students received. (The dentists were asked to continue their extraction and filling service for decayed teeth or cavities, since that service would not “interfere with the nutritional study.”)
A journalist documenting this research 50 years later, in 2000, interviewed the government physician who supervised it, a former head of nutrition for the country. Dr. L.B. Pett, then age 90, defended the work, saying dental care was only stopped “for a limited time or place or purpose.” Bioethicists did not discuss the 2000 article, according to Michael McDonald, emeritus bioethicist at the University of British Columbia.
Mosby’s paper came out in the journal, Histoire Sociale/Social History in mid-July and he immediately blogged about the article on his website and tweeted a link, which got to a reporter for the Canadian Press. The resulting wire service article came out the same week that Canada’s largest First Nations group, the Assembly of First Nations, was holding its annual meeting. When the chiefs issued their resolution about the research, the media coverage intensified.
The public response is a tribute to Mosby’s work and his presence in the twitterverse, but it is also the result of changes in Canada’s relationship with its indigenous peoples. In 2007, after multiple lawsuits over sexual and physical abuse at residential schools, the Canadian government reached a multibillion-dollar settlement with school survivors. A year later, Prime Minister Stephen Harper publicly apologized for the schools and the government established a Truth and Reconciliation Commission to document survivors’ experiences. Yet the story of the nutrition research still came as a shock. “I think people feel really betrayed,” said Brittany Luby, a lecturer in Aboriginal history at Laurentian University in Sudbury, Ontario, when I spoke to her soon after Mosby’s paper appeared. She was hearing from elders who feared they had been subjects in the research.
For my reporting for the Canadian Medical Association Journal, I also interviewed Susan Zimmerman, director of the federal office for research integrity. “Sadly, this is not the only example we could point to,” she said, noting other cases of research abuse involving Canada’s Aboriginals, but she emphasized that under Canada’s current research rules, Aboriginals are explicitly protected. The Tri-Council Policy Statement-2, in place since 2010, requires that researchers studying First Nations, Inuit, or Métis peoples take direction from those communities and their leaders.
Investigating research from 50 or 60 years ago is not Zimmerman’s job; that task falls to the Truth and Reconciliation Commission, where staff spent part of 2012 arguing for the right to access archival records. The Commission won its case in January 2013, when an Ontario court ordered the government to provide it with all relevant documents, but there were still unexplained delays. Then the nutrition research focused a spotlight on the Commission’s work and by August, a Commission team was at Library and Archives Canada for a three-month stint. In October, a Commission spokesperson told me via e-mail that the team had identified 4,000 health-related documents deemed “worth digitizing.”
The documents may yield insights about other research. The Commission chair has said that Aboriginals were used in drug tests; historian Maureen Lux of Brock University in St. Catherine’s, Ontario, has evidence of other drug testing in Indian hospitals; and Mosby received an anonymous letter describing dental research.
But it can be difficult to obtain records of health research. A Health Canada spokesperson wrote me in an e-mail that historians’ requests for such records “would be assessed on a case-by-case basis,” but Lux said by e-mail that she thinks “the process would be time-consuming, and likely fruitless.” Underscoring her point, a Canadian veteran who spent years seeking health records to support his pension claim, learned recently that the records were destroyed because federal archivists determined that old hospital patient files lack “archival value.” Lux and Mosby are using publicly available archives and oral interviews to continue their investigations.
The Truth and Reconciliation Commission will also continue its work. Originally slated to expire in June 2014, the Commission had been seeking an extension, an idea that gained momentum once the nutrition research was exposed. In November, Canada’s Minister for Aboriginal Affairs announced that his office supports an extension, essentially guaranteeing that the Commission will last another year. So the digging will continue–on multiple fronts, and more painful stories may emerge.
Miriam Shuchman, M.D., is Associate Director of the Research Ethics Consult Service at the Buffalo Clinical and Translational Research Center, University at Buffalo, State University of New York, and Associate Professor of Psychiatry in the Faculty of Medicine, University of Toronto.
Posted by Susan Gilbert at 12/09/2013 10:03:21 AM |