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Commission: U.S. needs privacy standards for genome data

October 12, 2012|By Eryn Brown | Los Angeles Times
  • On Thursday, the presidential bioethics commission issued its report on genomics and privacy. The conclusion: The U.S. needs better standards.
On Thursday, the presidential bioethics commission issued its report… (Jane Ades / NHGRI )

In many respects, it's getting easier and easier to sequence and interpret the human genome, the full set of DNA letters that makes up a person's genetic blueprint.  Technology is improving, making the process cheaper and faster.  Vast data centers allow researchers to probe genetic data on vast scales, seeking out connections between specific genetic variants and human traits.  Scientists are also beginning to understand better the function of all that DNA (see related items).

Someday, the thinking goes, patient genomes will be tested and archived as a matter of course, and physicians will be able to look up DNA profiles to guide treatment decisions.  But before that happens, a presidential commission said this week, federal and state policymakers in the U.S. will need to hammer out better privacy protections.

In a report published Thursday, the Presidential Commission for the Study of Bioethical Issues discussed why it was calling for clearer guidance. 

Reaping benefits from all that genetic testing, the commission wrote, will require thousands -- "perhaps millions," the report said -- to submit samples for genetic testing and to allow researchers to pore over their DNA and match it up with their medical histories. Doing this may allow scientists to begin to associate variants with particular traits -- but it may not benefit those individuals directly, the commission wrote.  

With that in mind, said commission chairwoman Amy Gutmann in a statement, people "who are willing to share some of the most intimate information about themselves for the sake of medical progress should be assured appropriate confidentiality." 

For example, she said, people providing samples should understand and be comfortable with the conditions under which institutions and researchers are allowed to divulge (if they're allowed to divulge) "any discovered genetic variations that link to increased likelihood of certain diseases, such as Alzheimer's, heart disease and schizophrenia. 

"Without such assurance in place," she continued, "individuals are less likely to voluntarily supply the data that have the potential to benefit us all with life-saving treatments for genetic diseases.”

One recommendation for new privacy standards?  Define a “consistent floor of protections” that should include prohibiting unauthorized genome sequencing without consent of the individual. Currently, the report noted, half of states allow surreptitious commercial testing -- which means anyone could collect one's DNA (from, say, a used coffee cup), get it sequenced and use the results in any number of ways.  

The report also called on policy makers to standardize consent and security procedures and to develop procedures to inform patients of relevant research results and "incidental findings" from sequencing -- for instance, the news that an unsuspecting study volunteer has a gene that is associated with early-onset Alzheimer's disease.

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