UC Berkeley genetic researchers say a ruling from the California Department of Public Health (CDPH) could have a chilling effect on biomedical research now that they have been ordered not to release individual DNA results to hundreds of incoming students.
"The CDPH took the position that since we were returning DNA information back to the volunteers in our educational program, then they felt it fell under regulatory guidelines," Dean of Biological Sciences Mark Schlissel said.
At issue is a program called "Bring Your Genes to Cal." Over the summer, about 5,000 incoming freshman and transfer students received saliva kits and returned them on a voluntary basis, with a promise from the university that they would get their individual results for three common genetic variants. So far, about 600 students have returned the kits.
"The ruling from the California Department of Public Health literally means that I can't advise red-haired students because of their genotype to protect their health with sunscreen, and that's obviously a nonsensical position," UC Berkeley genetics researcher Jasper Rine said.
"The biggest concern is that when people get genetic information they often will misunderstand it," Hank Greely of Stanford Law School said. "If someone gets a piece of information about their genes without a good chance to have it explained to them by an expert, they may misinterpret it in ways that hurt them."
So now UC Berkeley researchers may have a new ethical dilemma on their hands because they plan to go ahead and test hundreds of samples submitted by students who thought they were going to receive an individual result.
"We certainly told the students that we were planning on doing this, and this is a conundrum that we haven't completely solved yet," Rine said.
UC Berkeley researchers plan to release their aggregate findings in lectures and panel discussions this fall.