Under pressure from state public health officials, the professors behind UC Berkeley’s controversial plan to genetically test incoming freshmen and transfer students said Thursday they will scale back the program so that participants will not receive personal results from their DNA samples.
The university raised the ire of genetic watchdog and privacy groups in May when it first launched “Bring Your Genes to Cal.” The voluntary program is believed to be the largest genetic testing project at a U.S. university.
The 5,500 incoming freshman and transfer students for the fall semester received testing kits in the mail and were asked to submit cheek swabs of their DNA to kick off a yearly exercise to involve the new students in a common educational experience centered on a theme. This year’s theme is personalized medicine.
Students were to receive personal information about three of their genes – those related to the ability to break down lactose, metabolize alcohol and absorb folates. This information was to be the basis of lectures and discussions on such topics as the ethical, social and legal interpretations of genetic testing.
But what was meant to be a group educational exercise turned into a lesson for the university on the politics and policy of medical testing.
The program was the subject of a state Assembly committee hearing on Tuesday in Sacramento. On Wednesday, officials from the state Department of Public Health said the university must use certified laboratories that meet specific standards, rather than the campus labs, if the school planned to release individualized test results, identified only by barcodes, to students.
“The California Department of Public Health made the determination that what we’re doing isn’t really actual research or education; that what we’re doing is providing medical information, conducting a test,” said Dr. Mark Schlissel, dean of biological sciences at UC Berkeley’s College of Letters & Science and a professor of molecular and cell biology.
Schlissel said he disagreed with that assessment, but said the university will comply with state regulators. UC officials have asked the Department of Public Health to provide legal authority for its interpretation.
The university still plans to analyze the DNA samples in a campus research lab, but students will not have access to their personal results. Instead, the test results will be presented in aggregate to students during lectures and panel discussions this fall.
Schlissel said the controversy and intervention by state regulators has raised interesting questions for the discussions. “Who has authority to tell an individual what they’re allowed to know about themselves?” he said. “I don’t know the answer to that.”
About 700 students have already submitted their samples.
Critics had raised questions about how the genetic information, even seemingly innocuous, could be misinterpreted or misused. For example, students who learn they metabolize alcohol well may mistakenly think they can overindulge without consequence.
Jeremy Gruber, who testified at Tuesday’s hearing before the Assembly Committee on Higher Education in his role as president of the Council for Responsible Genetics, still has lingering concerns about how the samples will be handled and whether students had the proper amount of information before offering consent to provide them.
“The fact it required the intervention of the Department of Public Health before they would act in the best interest of their students is absolutely appalling,” he said.
UC Berkeley officials have said the university will incinerate the samples after they are tested in the next few weeks. Jesse Reynolds, policy analyst at the Center for Genetics and Society in Berkeley, had opposed the university’s program primarily over privacy concerns and what he considered the lack of research into the implications of such a mass experiment.
He said restricting students from receiving information about their personal genetics essentially cancels the “personalized medicine” aspect of the program. He said that although students signed consent forms to participate as part of submitting their DNA samples, he is concerned they have now signed consent forms for what is to be a different program.
“Genetic testing in general and personalized medicine specifically are likely to be an increasing part of our lives,” Reynolds said. “More education is certainly needed, but this was not the way to go about it.”