US panel urges care as DNA sequencing goes mainstream

A top bioethics panel warned Thursday that the rise of affordable DNA sequencing will jeopardize patient privacy on a wide scale unless governments embrace preemptive standards on handling genetic data. 

In a new report, the Presidential Commission on Bioethics touted the "enormous promise" of whole-genome sequencing when leveraged for medical advancement. But the panel also urged federal and state officials to take an active role in preventing privacy lapses that could leave patients vulnerable.

Commission Chairwoman Amy Gutmann described day-to-day situations in which an individual's "most personal data" could be exploited without their knowledge. 

"In many states in the U.S., someone could legally pick up your discarded coffee cup and send a sample of your saliva out for sequencing to see if you show a predisposition for certain diseases," Gutmann said in a statement.

The commission's report called the potential consequences of covert testing "profound."

"This information might then be misused, for example, by a contentious spouse as evidence of unfitness to parent in a custody case," the report stated. "Or, the information might be publicized by a malicious stranger or acquaintance without the individual's knowledge."

Only about half of U.S. states protect residents from covert testing, according to the commission.

So far, genome sequencing remains too expensive for the coffee-cup example to prompt great fears. But the report stated that sequencing prices are "dropping rapidly" toward the cost of any basic diagnostic test.

"Soon, it will be less expensive to sequence an entire genome than to perform a few individual genetic tests," the report also noted, revealing the possibility that patients could learn more about their genetic data than they might wish to.

"One might shoulder the burden of knowing medical information regarding future adverse health conditions for which there is currently no treatment," the report stated.

The panel recommended that federal and state governments adopt standards to ensure the privacy and security of genetic information. The guidelines should apply to anyone who might handle it: "to those who collect the data, to researchers, to third-party storage and analysis providers."

The report also urged clear procedures on consent for sequencing in clinical and research environments.

The risk, Gutmann said, is that individuals will be too worried about the risks involved in gene sequencing to take part in major and potentially groundbreaking research.

"The life-saving potential of genome sequencing depends on gathering genetic information from many thousands (perhaps millions) of individuals, most of whom will not directly benefit from the research," Gutmann said.

"Those who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality," she said.

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