Patients demand biorights in samples donated for medical research
In 2016, rising awareness of the profits pharmaceutical and other medical companies make from personal data such as DNA samples and cell lines led to the rise of a "biorights" movement to ensure that patients retain greater control over their contributions. A federal complaint filed by the American Civil Liberties Union on behalf of four people against Myriad Genetics Laboratories, a Utah-based company, asked the US Department of Health and Human Services to make sure patients retain access to all the genetic insights a company gains from their data rather than just being told if they have a specific gene or condition. By October 2016, DNAsimple, a company that pays for biological samples for research, had signed up almost 4,000 people.
Other issues raised by the fledgling movement include a requirement for researchers to obtain permission to use tissue left over from medical procedures, even in cases where the patient is not identified and notification when companies gain insights from studying individuals' DNA. To date, the US's estimated 600 biobanks do not share the profits with patients whose samples they store, though they do sometimes repay patients with information.
Writer: Beth Daley and Ellen Cranley
Publication: Boston Globe