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In June, Sara* received a message asking whether she wanted to continue to participate in a massive, multicenter research project led by scientists at Aarhus University in Denmark. The iPsych study, the message said, had sequenced her genetic data from a blood sample taken at birth. For more than a decade, researchers had used those data, alongside Denmark’s famously meticulous public record system, to investigate the genetic and environmental causes of mental illnesses.
Sara, who has been diagnosed with autism and depression, was shocked. This was the first she had heard she was part of one of the largest cohort studies of psychiatric illness in the world. She had never consented to her data being used. “It sent me spiraling, I broke completely down,” she says. “It really triggered previous experiences [of] not being treated as a human being.”
Sara is one of 140,000 Danes born between 1981 and 2008 who received a message from iPsych in late June, following critical coverage of the project’s approach to consent in Danish media. When the project began in 2012, an ethics committee...