DNA privacy bill strikes right balance

by jeeg 28. January 2015 19:55

 

In 1997’s futuristic “Gattaca,” one’s DNA determined one’s destiny. Released a dozen years after the beginning of real-life genetic testing, the movie tracked a man “conceived by love rather than in a lab,” as Variety put it. Because his lousy genes limited his career, he went to “a DNA broker who sells false identities to the genetically inferior.”

As with all dystopian stories, “Gattaca” uses the future to explore trends in the present. Since the movie’s release, the genetic-data conundrum has become more pronounced. Testing offers great opportunities to cure disease and exonerate the innocent accused of crimes, but it also offers potential for government and private firms to invade privacy and misuse data.

A new bill, proposed by Assemblyman Mike Gatto, D-Glendale, attempts to create a balance by making it clear who owns the DNA samples already collected in California hospitals. “A government repository of the DNA of all children born? It sounds like something out of 20th century dystopian fiction,” Gatto’s office wrote, in a statement last week announcing the proposal.

As it further explains, newborns are tested — via a blood sample taken from the heel of about a half-million babies born here each year — and the information is sent to laboratories to screen for diseases and genetic disorders. Most parents don’t even know about the test. All states do this, but California is one of a handful where the state owns and retains the information, and even sells it to private research companies.

That’s the problem, according to Gatto. In an interview last week, Gatto described potentially troubling scenarios. When hackers stole people’s credit-card data from a chain store, that created problems for consumers — but imagine what can happen if hackers get into a database of genetic information? Right now, there are no real protections.

And then there’s the potential for official misuses of the data. Technology is developing rapidly. It’s not hard to envision a “Gattaca”-like scenario in which, as Gatto explains, eventually it’s possible to learn whether a person has a “violent gene” or is predisposed toward alcoholism. “It gets kind of disturbing,” he said. “I don’t mean to sound alarms, but it gets alarming.”

Supporters of the current system say the information used for research is not attached to any person’s name. But that may be a weak protection. “The state screening programs … de-identify newborn baby blood spots before loaning them out to research, but so far truly ‘anonymizing’ DNA has proved impossible,” according to a July Newsweek report that inspired the Gatto bill. Massachusetts researchers found the identities of anonymous DNA donors “by cross-referencing their data with publicly available information.”

AB 170 is a work in progress, but the parameters are simple: “The bill would authorize a parent or guardian of a minor child and the newborn child, once he or she is legally an adult, to request that the department destroy, not use for research purposes, or both, the blood sample, and the department would be required to do so.” It, in essence, gives the ownership right to its rightful owners. And it requires the state to provide various disclosures.

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  • Fortunately, this bill doesn’t take the Legislature’s usual “if in doubt, ban it” approach. The Newsweek article begins with a touching interview with a 36-year-old filmmaker who was identified as an infant with a rare genetic disorder. Had he not been tested and then treated, he would have faced a horrifically debilitating disease. Instead, he’s living a normal life. Gatto makes it clear that such testing “does a lot of good.”

    But the program might need some constraints — and it certainly is worth a debate. Gatto is chairman of the new Assembly Committee on Privacy and Consumer Protection, which promises to be one of the most significant committees in the Assembly given myriad and growing threats to our privacy and civil liberties.

    Maybe the committee will help rebuild a long-needed and bipartisan “civil liberties coalition.” After all, it’s in everyone’s interest to assure movies such as “Gattaca” remain nothing more than entertaining fiction.

    Steven Greenhut-UT San Diego

     

     

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