DNA tests gone wild

JULY 26, 2010

The University of California, Berkeley, has inadvertently stepped into a brewing ethical debate over genetic testing and medical privacy after it asked the incoming freshman class to submit to the campus cotton swabs with DNA samples from their saliva.

The unusual experiment is part of Berkeley’s annual “On the Same Page” orientation program, which, according to the university, is designed to “engage incoming students with our faculty in deep and meaningful discussion about important societal issues.” The project has already been sparking such a debate, but the initial backlash has, by officials’ own admission, caught the university by surprise, which doesn’t say great things about the folks running this program.

Now the university is the target of an Assembly bill that urges the University of California to refrain from asking its students for genetic samples and that would deduct state funding from any programs such as the one that’s at the heart of the controversy. Critics worry that the project is subtly coercive; want to know whether the private foundation funding the experiment has a vested interest in the expansion of DNA testing; and suggest that Berkeley could be violating the law by operating a clinical laboratory without a license.

The university emphasizes that no student is being forced to participate. “Lost in this tempest is that the program is voluntary and completely anonymous,” Dean Mark Schlissel told me. He says the campus is exempt from those medical laboratory requirements. He won’t disclose the name of the foundation that is funding the project to spare them from this controversy, but says it has no financial stake in the outcome and is not affiliated with any company.

My view is the university thought it would be clever by offering a hands-on project to spark student interest. Usually, Berkeley asks incoming freshmen to read a book for a discussion as part of the program. This was a more interesting idea, but Berkeley should indeed disclose the funding source and should have been more careful about detailing the protections of the data and less arrogant in dealing with the legitimate privacy concerns raised by program critics.

The project only looks at three fairly benign genetic variants “that determine how efficiently you use the vitamin folic acid (vitamin B9), how well you digest milk products, and whether you are prone to facial flushing and nausea if you consume alcohol,” according to the letter the university sent to students. It promises not to look at more troubling aspects of DNA sampling (i.e., the likelihood of being afflicted with various diseases).

I wonder why the university didn’t first teach the course that deals with ethical issues surrounding DNA before asking for student samples. The students have yet to learn about the issue, so how can they make an informed choice? Nevertheless, the brouhaha goes beyond any technical transgression Berkeley seems to be making. The negative reaction might be excessive, but it’s a sign of the thorny issues involved with this emerging science.

The real issue is the understandable unease the public has as DNA testing and other privacy-threatening technologies become better developed. There’s legitimate concern about that slippery slope, with critics fearing that soon DNA testing will be mandatory and widespread. Once someone’s personal genetic information is out there, it could have lifelong effects on, say, the ability to buy health insurance. Given the increasingly close link between corporations that do such testing and government funding, it’s not overly conspiratorial to worry about government databases with personal genetic information. Already, the state collects DNA samples of everyone arrested – not convicted, mind you – of felonies. What’s next?

As the Assembly legislation points out, “The collection, testing and storage of genetic material pose unique challenges to protecting individual privacy.” It notes that “even seemingly anonymous genetic data can be used to indentify individual research subjects.”

Data in university databases have, in the past, been subject to attacks by hackers. Yet people who provide DNA information “could suffer consequences later in life” if the confidentiality of the data is compromised, according to the bill.

As a libertarian, I’m highly concerned about personal privacy and fearful of massive databases that allow officials to monitor individuals.

But there’s another side to this debate. Much of the criticism of the Berkeley project comes from self-described genetic ethicists who, quite frankly, don’t think that people are smart enough to handle genetic information.

For instance, a policy analyst for the Center for Genetics and Society (based in Berkeley, but not associated with the university) argued in the San Francisco Chronicle that the UC Berkeley “endeavor will have the effect of legitimizing, if not promoting, the controversial direct-to-consumer genetics testing industry. … Several medical and scientific professional societies have come out strongly against them.” The writer also worries, given the university’s focus on a gene related to alcoholism, that students might “interpret their supposedly superior alcohol metabolism as a green light to imbibe heavily.”

This reflects what Reason magazine science writer Ron Bailey refers to as “medical paternalism.” He writes extensively about the ethical “busybodies” who are trying to shut down or over-regulate the emerging personalized medicine industry.

“Instead of trying to slow down social learning about genomics, we should let companies and consumers interact, so that they will both learn how better to explain and understand the information such testing will provide,” he wrote.

Berkeley’s Schlissel agrees that it’s “paternalistic” to think that the public should not have access to medical information unless they or a doctor are present. These are the type of issues he wants the freshman class to talk about.

The public surely needs to look more deeply at issues related to medical ethics, personal privacy and the like. Had Berkeley done a better job designing the experiment – i.e., by more carefully addressing potential privacy, legal and conflict-of-interest concerns – there might be a wider debate over the core issues and less angst over the program itself.

–Steven Greenhut