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Federal Commission Pushes For Genetic Data Privacy Protections

A small piece of human DNA.
Wiki Commons

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

In a report out Thursday, 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, and only about half the states in our country offer protections against surreptitious commercial testing,” Gutmann said.

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. 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 said.

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