In June, Elizabeth blogged about UC Berkeley’s “On the Same Page Program,” which usually selects a common book like we do. This year, they invited students to submit a DNA sample. The plan was for students to receive personalized results on selected factors as part of a campus discussion on personalized medicine.
Last week, the California Department of Public Health instructed the school not to release individual test results as planned, according to a campus press release on the program site. Instead, campus conversations such as lectures and panels will focus on results in the aggregate. Campus planners are disappointed by the change, but hope that the debate will enrich their discussions of personalized medicine and rights to personal medical information.
The administrators of “On the Same Page” have been very generous with time and planning documents in helping UW-Madison get “Go Big Read” started. Their initiative certainly generated a lot of controversy and I’m sure they’ll also get to the thoughtful conversations they are hoping for.
UW Libraries & Go Big Read
UC Berkely wants their freshmen to discover what they are made of, literally. The Los Angeles Times reports that Berkely is sending DNA genetic testing kits to their incoming class, about 5500 students, as part of the campus collective event. Three genes—lactose, folic acid and alcohol—will be tested and the results will be available to students online. When the students arrive to campus, there will be lectures by faculty about what the results mean and any student can get one-on-one counseling. Genetics professor Jasper Rine explains that these genes were chosen so “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.” These genes are basically harmless and the results should not be traumatic to the students.
The program, called “Bring Your Genes to Cal”, is controversial and meant to cause discussion among the different disciplines on campus but has brought unexpected outside criticism. Privacy and ethics groups have been rolling out of the wood work and asking UC Berkley to shut the program down. Since these groups are primarily concerned with the role genetic testing plays in discrimination in jobs and healthcare, they are apprehensive about Berkley’s ability to ensure the privacy of the results of these students in the future. However, biological sciences dean Dr. Mark Schlissel points out that participation in the testing is completely voluntary and the samples will be destroyed after the students receive their results. Schlissel goes on to explain the program was approved by the university’s research board that examines that research using human subject and found the program safe.
Schlissel’s arguments do little to alleviate the concerns of the Council for Responsible Genetics and Center for Genetics and Society, two of UC Berkley’s loudest critics. These groups are worried about the students’ mental welfare as well as a perceived lack of safeguards. More than one critic pointed out that students who do not want to submit their samples will feel obligated because they will feel ostracized on a campus focused on the results. Such critics, like Jeremy Gruber, are not entirely wrong; there were many negative comments on the UC Berkley’s student newspaper’s article about the program. Nevertheless, Berkley has faith in this innovative program and is going forward with their plans for the fall despite the criticism. It is apparent that this program is going to create hot conversation about the roles of medicine, research, privacy and ethics.