Magazine article Information Management

Opinion: DNA Donors Should Demand Better Privacy Protections

Magazine article Information Management

Opinion: DNA Donors Should Demand Better Privacy Protections

Article excerpt

A medical doctor and a lawyer from Yale Law School's Information Society Project are advocating for stronger privacy protections for DNA donors, especially in reference to All of Us, a project administered by the National Institutes of Health.

According to Mason Marks, M.D., and Tiffany Li, J.D., whose op-ed appears on StatNews.com, the goal of All of Us-to uncover paths toward delivering precision medicine-is a good one. But the authors warn prospective donors to "decline the invitation to join unless you fully understand and accept the risks."

The authors say a genetic profile is far more complex than a fingerprint and is the single most identifiable characteristic an individual has. "Such profiles contain a treasure trove of information about individuals and their health, such as predispositions for cancer, neurodegenerative disease, and mental illness," they assert.

Reportedly, the All of Us project also seeks to collect biospecimens and data about donors' medical histories, lifestyles, families, and psychological health. In addition to the DNA, it gathers data from wearables like Fitbits and Apple Watches.

According to Marks and Li, U.S. health privacy laws were written before genetic privacy was an issue. The Health Insurance Portability and Accountability Act (HIPAA), for example, does not apply to companies like GEDmatch, 23andMe, orAncestry.com, all of which workwith DNA samples in some capacity. And it does not apply to All of Us, to its corporate partners, or to new forms of medical data gathered from websites, apps, and wearables. …

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