When UC Berkeley officials came up with the idea of asking all new students to volunteer a DNA swab as part of an unusual fall orientation program, they expected to stimulate discussion. They weren’t quite prepared for how much.
The plan drew quick criticism from privacy watchdogs and ethicists, who said the DNA project, linked to seminars about personalized medicine, would be an unprecedented and troubling use of genetics testing by an American university. Several urged the campus to cancel or modify the project.
The university still plans to send the swabs this summer to 5,500 incoming freshmen and transfer students, asking them to return them with cells from inside their mouths. Campus officials estimated that about 1,000 students would participate and said no one would be penalized for refusing.
The samples will be analyzed for gene variations that affect people’s reactions to three dietary substances: lactose, folic acid and alcohol. Only the participants will be able to learn about their own results, the project promises. Then the samples will be destroyed.
Dubbed “Bring Your Genes to Cal,” the program is part of UC Berkeley’s annual “On the Same Page” program, in which incoming students, like those at many colleges, typically are asked to read the same book over the summer and discuss them in fall seminars.
This year’s program is more ambitious, seeking to engage students in a new way on a cutting-edge topic, said Alix Schwartz, who coordinates the orientation program for UC Berkeley’s College of Letters and Science. “We needed something that will grab their attention,” she said. “We felt if you get a swab in the mail, you will at least think about it.”
When students arrive on campus, faculty members will lecture about what the DNA results could mean — facial flushing after drinking alcohol or the need to eat more green leafy vegetables, for example — and will be available for counseling, if students request it.
Those possible reactions to the three substances are not life-threatening, and finding out about them should not be traumatic, the professors heading the project said.
“Our view was to select genes in which a student could either ignore what they learned, and be no worse off than they were before, or could use the information constructively if they choose, such as to tune their intake of dairy products,” UC Berkeley genetics professor Jasper Rine, who will deliver the main orientation lecture, said in an e-mail.
But critics said that despite the disclaimers, incoming students would feel pressure to join in, perhaps out of concern they might alienate future professors. “That to me is anything but voluntary,” said Jeremy Gruber, president of the Council for Responsible Genetics, based in Cambridge, Mass.
Gruber’s organization, along with the Berkeley-based Center for Genetics and Society, is among those urging the campus to drop the project. Such groups are increasingly concerned about privacy and the risk of discrimination in job hiring and medical insurance as the technology of DNA testing advances without broad agreement on its many uses.
Critics have also noted that the Food and Drug Administration has recently challenged the sale of over-the-counter genetics tests while it investigates medical claims associated with them. At least one large drugstore chain has postponed plans to carry one such test.
The UC Berkeley orientation program’s very name is coercive because students who don’t agree to the test won’t feel “on the same page” with everyone else, said UC Berkeley and NYU sociology professor Troy Duster, who served on an advisory council to the National Center for Human Genome Research.
Duster and other critics say they also have concerns that the DNA samples could be used to explore other, more worrisome genetic traits and that there is no way to ensure that the material would remain private.
Mark Schlissel, UC Berkeley’s dean of biological sciences, said that sufficient privacy protections are in place. He also emphasized that the project was approved by the campus review board for all human-involved experiments.
Schlissel said he regretted that the initial information sent to faculty did not fully explain the project and that some critics reacted without knowing all the safeguards. “A lot of folks imagined the worst, and organizations that care a lot about these issues are using this as a way to get public attention,” he said.
At the same time, he and Rine said they expected the debate over the plan to enliven the September seminars by scientists, sociologists, ethicists and lawyers. “We all have a stake in making sure that we maximize the benefits and minimize the risks of these new technologies,” Rine said.
Arthur L. Caplan, director of the University of Pennsylvania’s Center for Bioethics, said he supports the testing project, but recommends that students are told their results during one-on-one counseling sessions, rather than from a website, as is now planned.
“I think the idea was clever and innovative,” he said. “I think they came up with a very interesting idea in demonstrating personalized medicine and genetic testing.”
One aspect of the project has been modified in response to concerns. The university had planned to offer several more detailed DNA analyses from a commercial company as prizes in an essay and art contest about personalized medicine. But the awards will now be cash; the university said it did not want to appear to be endorsing any product or taking a position on the controversial issue of direct-to-consumer testing.
Administrators said the total cost of the testing is estimated to be about $50,000, which will be funded by a College of Letters and Science donation pool, not state funds.
UC Berkeley’s student newspaper, the Daily Californian, was the first to report on the DNA plan and comments on the paper’s website in recent days have reflected some opposition: “Big Brother at Its Most Insidious,” one wrote. “Creepy,” another said.
But Jeremy Hardin, a UC Berkeley-bound senior at Wilson High School in Long Beach, was among a number of students interviewed who voiced support for the project. Hardin said he will be happy to send in his DNA samples and trusts the university to safeguard participants’ privacy. “I’m totally for it. No one is forcing me to do it, and there’s no real downside I can see,” said the 17-year-old, who expects to major in philosophy and take pre-med courses.
In addition, he said, “you can actually learn something about yourself and about the group.”