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Health, Science, Environment

Federal Commission Calls For Stronger Protections For Human Genome Data

Jane Ades, NHGRI

A federal panel is calling for stronger privacy protections for human genetic data.

In a report out today, the Presidential Commission for the Study of Bioethical Issues said “whole genome sequencing” — which provides a unique blueprint of each person’s DNA —  holds great promise for advancing medical research and clinical care.

But the Commission said genetic data can also be misused and need to be adequately protected.

In a conference call with the press, Commission Chair Amy Gutmann said right now, genetic data are subject to an inconsistent patchwork of state and federal regulations.

“Someone could legally pick up your discarded coffee cup, send a sample of your saliva out for sequencing to see if you show a predisposition for certain diseases,” Gutmann said. “And only about half the states in our country offer protections against surreptitious commercial testing.”

Gutmann said with the falling cost of whole genome sequencing — which is expected to reach $1,000 in the not-to-distant future — people need to be protected from unauthorized use of their genetic data.

Washington University law professor and bioethicist Rebecca Dresser agrees. She says how genetic data are being obtained — and for what purpose — is constantly changing.

“It’s a moving target,” Dresser said. “And there’s activity all over the place from commercial DNA companies like 23andMe, forensic uses in criminal law, and then, of course, in research and medicine.”

Dresser says people leave bits of their DNA everywhere, and they need to have a say in what happens to their genetic information and how it will be used.

The Genome Institute at Washington University, which bills itself as a world leader in genomics research, declined to comment for this story.

Follow Véronique LaCapra on Twitter: @KWMUScience

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