Jasper Rine, the molecular and cell biology professor at the center of this debate, had no idea that his relatively simple project would ignite a firestorm of publicity and controversy that would eventually bring him head-to-head with the California Department of Public Health. His plan had been to provide a unifying experience for Cal’s incoming freshman class and teach them a little about understanding genetic data, by collecting some of their DNA and testing them for three simple genetic variants associated with the metabolism of alcohol, lactose, and folate.
Though scientifically very straight-forward, Rine and his co-planners knew that collecting genetic information can be a very sensitive issue, so they took a number of steps to ensure that safety and privacy concerns were met. They tested for relatively innocuous genetic variants, none of which are associated with any serious medical risk. To allay privacy concerns, the samples were associated with bar codes that had been randomly distributed to the mailed packets so that each student would be the only person who could possibly identify the results as his or her own. Also, even though it isn’t strictly required for educational exercises, they applied for and received approval for research with human subjects. And participation in the program was completely optional.
Despite these safeguards, when the NY Times covered the project in May 2010, watchdog groups like the Center for Genetics and Society grabbed hold of the story, generating headlines like “Ethics of UC Berkeley’s gene testing questioned.” After months of consulting with lawyers and debating with state officials, the program went forward in a modified form: submitted samples were tested, but the results could not be returned to the students.
This adjustment was an accession to the main opposition to the project, which appeared to be that genetic information should be available only to medical professionals, not individuals. This concern is also being addressed in a larger arena; direct-to-consumer genetic testing was a hot topic in July, when a congressional committee held a hearing about the subject. Rine, who discussed his experience at a recent Science, Technology and Engineering Policy seminar, doesn’t believe that the availability of genetic information needs to be regulated. Others disagree; see this recent Science Policy Forum article, for example.
So the question remains: should individuals have access to their own genetic information? Or is it too dangerous, given that there is still so much we don’t know about how genetics actually manifest in a patient’s medical history? Was “Bring Your Genes to Cal” a good, safe educational exercise, or, as some argued, one step on a “slippery slope”?