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Reframing the Privacy Debate

Increased access to genomic information brought on by numerous technological advances, and the accompanying concerns about protecting individuals' privacy, has some in the community calling for shift in the current regulatory focus.

In an editorial published in Nature Molecular Systems Biology, Eric Schadt, director of Mount Sinai School of Medicine's Institute for Genomics and Multiscale Biology in New York City, writes that the best way adapt to this "rapidly changing social and technological landscape" is to focus on "education and legislation aimed less at protecting privacy and more at preventing discrimination."

According to Schadt, "we must inform patients on what is happening in biology and medicine today and explain why high-dimensional data we collect as researchers cannot really be completely de-identified."

He suggests that direct-to-consumer genomics companies like 23andMe "may perhaps have a valuable educational role in this context, by enabling anyone to interact with and explore directly their own genomic data, their ancestry, and how others may use their data in the future."

He also points out that because more patients are willing to share their personal data with others, "current rules governing individual consent will need to give way to "new forms of consent" that "aim at educating research subjects on what the data collected on them can say and the degree to which it can or cannot be protected."

Additionally, "legislative bodies must also be appropriately educated on the consequences of this evolution and expected to enact laws that protect individuals from discrimination based upon their personal information," Schadt says.

The Scan

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