Class Cancelled: Media Coverage of UC Berkeley’s Retreat on Gene Tests
Two weeks after UC Berkeley backed away from its widely criticized “Bring Your Genes to Cal” program, commentary about the controversial experiment continues. Recent opinion pieces have been published in the Marin Independent Journal, Berkeley Daily Planet, and GenomeWeb.
UC Berkeley announced a major shift in the program following public scrutiny and a warning from the California Department of Public Health that its plan to have students’ DNA samples analyzed at an uncertified lab would violate state law. Dean of Biological Sciences Dr. Mark Schlissel said that the university will therefore make only aggregate results available to the incoming students instead of providing individualized results. Several campus events about personal genomics will continue as scheduled.
The Center for Genetics and Society, the Council for Responsible Genetics and other public interest organizations applauded the decision to revamp the flawed project. Others expressing significant concerns included members of the California State Assembly Higher Education Committee, which held a public hearing on the program last month. Committee Chair Marty Block “welcomed news that the university will alter their program to comply with the state directive to ensure that laws assuring the accuracy and quality of medical testing are observed.”
National and state news outlets reported on the unraveling of events. Here is a sampling of the coverage:
[W]hat was meant to be a group educational exercise turned into an education for the university on the politics and policy of medical testing.
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.
Berkeley officials contend that the test results would not be medically significant. But the program was controversial with privacy advocates and ethicists complaining that it presented an unprecedented and disturbing use of genetic data by a university.
"It showed a lack of due diligence and consideration," said Jeremy Gruber, president of the Council for Responsible Genetics, based in Cambridge, Mass. He said he remained concerned about how the genetic samples would be used, despite UC's pledge to destroy the samples after collecting the results.
The faculty who came up with the idea and some students are disappointed. But others say the change is prudent. Jesse Reynolds, policy analyst at the Center for Genetics and Society, says the state health department didn't dictate educational policy. Instead, [he] said, “[T]his is a medical test and you are conducting a medical test on thousands of young men and women without the involvement of a physician and without using an appropriately certified laboratory. These are not curriculum issues.”
Personal gene testing has emerged as an increasingly controversial field. Medical ethicists criticized the Berkeley program, saying that students would feel pressured to submit saliva and wouldn’t know how to assess the results. Federal regulators, in a series of actions this year, have told makers of personalized gene test kits offered directly to consumers that the products must be approved before sale.
While educational experiences for students are a good thing, the main lesson here “was for the Berkeley administrators and for other universities thinking about doing something similar,” said Hank Greely, a Stanford University law professor focused on medical ethics. “Their goal was good but they hadn’t thought through sufficiently all the problems of implementing this in a safe and ethical way,” Greely said.
The plan was to test the saliva samples for three genes – those involved in breaking down lactose, metabolizing alcohol and absorbing folic acid. Genetics professor Jasper Rine testified that the goal was to engage students with an intellectual concept that had personal relevance.
Detractors said the plan was poorly thought out and rife with potential privacy violations and confusion for students. Hank Greely, director of the Center for Biomedical Ethics at Stanford, raised concerns that teenage students would misinterpret findings about themselves.
Jeremy Gruber, president of the Council for Responsible Genetics, said Berkeley freshmen could feel pressured to participate because of the way the test material was presented. The consent form that participating students had to sign listed the benefits of doing the genetic test, he said, but not the risks. "The consent form is pure marketing," Gruber said.
“Schlissel and Rine have repeatedly described the orientation exercise as a scientific experiment. We asked what hypothesis the experiment was designed to test.
Schlissel replied that the hypothesis being tested is whether or not programs such as “Bring Your Genes to Cal” are an effective way to engage students, particularly students not majoring in biology, in the complex issues that surround genetic testing. He added that the methodology would involve the taking of attitudinal surveys.
In effect, what appears on the surface to be a biological experiment now turns out to be a sociological experiment designed primarily by biologists (in extensive consultation with colleagues of many disciplines).”
Previously on Biopolitical Times:
