Cheap genome sequences demand new rules on privacy

Peter Aldhous, San Francisco bureau chief In the era of the $1000 human genome, new rules will be needed to protect people's genetic privacy.

The US government and individual states should harmonize a mish-mash of laws to ensure a basic "floor" of genetic privacy protection across the nation, however the data information was obtained, the commission adds. For instance, if a volunteer has their genome sequenced for research, the information should have similar protection from prying eyes as if the analysis had been ordered by a doctor for diagnostic purposes.

Breaches in security of DNA sequence data held on computer systems are the most obvious threat. But in 2009, New Scientist pointed to another danger by simulating the surreptitious analysis of my genome: a colleague used commercially available services to extract DNA from a glass from which I had drunk, and analyse it for my genetic predispositions to disease.

We ordered a scan of about 1 million letters of my genetic code, but plummeting prices and advancing technology will soon make it feasible to obtain a full genome sequence in a similar way, at modest cost.

The new report comes down firmly against surreptitious genome sequencing:"[P]olicies should protect individual privacy by prohibiting unauthorized whole genome sequencing without the consent of the individual from whom the sample came."

This is part of a larger patchwork of regulation on genetic privacy that the bioethics commission wants to see overhauled.

Geneticists taking samples for research are not covered by HIPAA, but separate rules covering informed consent and the protection of research subjects. Researchers are usually careful to protect volunteers' privacy, but if breaches were to occur, those responsible would not be subject to the same criminal prosecution.

Without clear and consistent guidelines to protect personal genetic information, the bioethics commission fears that people could suffer harm - in part by keeping secret information that could help their doctors provide better treatment.

It was only when Grove developed a bout of pneumonia that she knew could lead to permanent lung damage for people with the condition that she broke down, explaining in a tearful phone call to a clinic why she needed an urgent prescription for antibiotics.

"If it's too difficult for those companies to operate, we may have a bottleneck in providing access to the patient who needs that information," she says.

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Cheap genome sequences demand new rules on privacy