A group of faculty members at the University of California at Berkeley hoped to generate conversation among students, and expected a bit of criticism from colleagues, for asking incoming undergraduates to submit DNA samples that would be analyzed and discussed as part of an orientation program.
What they didn’t anticipate -- but got -- was national news media attention and letters from genetics watchdog groups calling on Berkeley to cancel its plans.
“We didn’t choose the topic to provoke a wave of publicity,” says Mark Schlissel, dean of biological sciences in Berkeley’s College of Letters and Science. “We thought that talking about genetic testing and personalized medicine would be most engaging if we got students involved.”
The college’s “On the Same Page” program had in the past used books by Stephen Hawking and Michael Pollan to start conversation on controversial issues, but biology faculty decided that the hands-on approach of analyzing students’ genes for tolerance of alcohol, folate and lactose was a more engaging way to connect students to lectures and seminars on the emerging field of personalized medicine.
On May 11, after the plan was approved by the university’s Committee for Protection of Human Subjects, Schlissel sent an e-mail message to faculty informing them of it and “inviting [them] to think of ways to participate -- a panel, a freshman seminar, incorporating related material into their courses,” he says.
For almost a week, faculty discussed the program – some critically – but it didn’t attract off-campus attention until the Daily Californian wrote about it on May 17. That article tipped off Inside Higher Ed, which ran its own article on May 18, and set off coverage over the next few days by The New York Times, the Associated Press and the national TV networks. “We didn’t expect this,” Schlissel says. “But in hindsight, we shouldn’t have been surprised.”
He adds: “What happened more broadly in the media is what I was hoping would happen on campus this fall – this only adds to it.”
Most of the coverage also included criticism. A few well-regarded academic bioethicists, including George Annas, of the Boston University School of Public Health, spoke out against the program in interviews. The Center for Responsible Genetics wrote to administrators asking that the “woefully naïve” program be canceled. The Center for Genetics and Society, a nonprofit based in Berkeley that is not connected to the university, also called on Berkeley to change its plans.
But the college has persisted. Alix Schwartz, director of academic planning for the College of Letters and Science's undergraduate division, says the college is “definitely not canceling the program.”
The only change the college has made is dropping its plans to award four students a full genetic analysis donated by 23andMe, a company under investigation by the U.S. House of Representatives, as a prize for the best submissions of writing and art related to personalized medicine. In its letter, the Center for Responsible Genetics said the college’s decision to be involved with “a commercial company … even if ostensibly for a contest prize as part of the program raises additional serious issues.”
On a frequently asked questions page added to “On the Same Page,” Schlissel says the college decided to drop the 23andMe award in favor of a cash prize “so as to avoid the appearance of endorsing a particular company or being perceived as taking a position on the issue of direct-to-consumer DNA testing.”
Berkeley has made clear that 23andMe won’t be performing the analysis of the three genes, but another company may, Schlissel says. “We may also go with an academic lab at a medical school -- some of those do these tests -- we’ll go with the group that gives us the best bid.”
Jeremy Gruber, president of the Center for Responsible Genetics, says he worries about how a company might handle students’ DNA. “These companies as part of their business model take DNA information, anonymize it and resell it. There’s nothing to say they won’t do this with the students’ DNA.”
Schlissel says the contract with the group that analyzes students’ samples will stipulate that “the sample gets destroyed immediately.” Companies, he says, have a responsibility to abide by that agreement. “These are companies that work in this particular market place and have the purpose of making money from us. They do that by sticking to our agreement.”
On Saturday, CNN broadcast an interview with Jasper Rine, a Berkeley professor of genetics, genomics and development, who is leading the project with Schlissel. He has been criticized for conflicts of interest with several companies that work on genetic testing. He and Schlissel both insist that his corporate interests have no connection to the project.
Gruber also worries about the program’s academic validity. Berkeley, he says, “is using students as guinea pigs as part of the learning process in an effort that has long-term issues in terms of privacy and potential discrimination. That is not part of the learning process.”
But some professors of genetics disagree.
Russ B. Altman, a professor of bioengineering, genetics and medicine at Stanford University, writes on his blog that “direct engagement with personal data is one very effective way to make all the issues crystal clear.”
Michael Eisen, an associate professor of molecular and cell biology at Berkeley, wrote on a blog that he considered the criticism to be “absurdly paternalistic.” The watchdog groups, he said, “at the core … think the public -- including our best and brightest students -- are incapable of understanding something as complex as human genetics, and that they need to be protected from this information.”
Even one of the program’s critics, Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, heralds the whole gambit as worthwhile. “If the point of the exercise was to get the students to talk about genetic testing and the issues around it, then mission accomplished,” he says. “Without collecting a single swab, the students learned about sensitive samples and genetic information in a way that has been made very concrete.”
Caplan says he hopes Berkeley will weave the controversy over the program into this fall’s programming. He also hopes other institutions can use it to examine ethical issues and to better consider any projects they work on that include genetic testing.