Instead of assigning the usual summer reading to new students, the University of California-Berkeley tried something different this year by asking each incoming freshman and transfer student to send in a DNA sample for genetic testing and subsequent discussion. The move sparked a contentious debate about the ethics behind genetic testing, leading the university to significantly modify the experiment.

 

Incoming students at the University of California-Berkeley were sent genetic testing kits so they could find out their tolerance for alcohol, lactose and folates. The project was modified significantly after the state of California intervened. The DNA swab, dubbed “Bring Your Genes to Cal,” was meant to tell each student who volunteered his or her ability to metabolize lactose (found in dairy products), alcohol and folates. But, critics have questioned whether students are equipped to understand the results and whether their privacy is being breached. Recently, maintaining that the assignment was technically medical testing, the California Department of Public Health told the university the DNA tests would have to be ordered by doctors and analyzed by certified laboratories. As a result, UC Berkeley will only present the collective results of about 1,000 participants at opening lectures for incoming freshmen, and no individual results will be provided.

What would students have done with the results?

Part of the controversy over “Bring Your Genes to Cal” stemmed from the fear that students might not know how to interpret the results. For example, Hank Greely, the director of Stanford University’s Center for Law and Biosciences, told National Public Radio that students who saw they had a “normal” tolerance for alcohol might be tempted to drink more.

 

Critics of the project were afraid students who found out their alcohol tolerance was "normal" might be tempted to drink more. University professors involved in the project say such questions would have been addressed during lectures planned to accompany the project. Moreover, they argue the genes chosen for testing were specifically selected to help students lead healthier lives according to their own needs. Students who learn they have difficulty metabolizing dairy products could avoid them, and those who know they need more folates (vitamins used to produce and maintain new cells) could get them from certain fruits and vegetables.

Genetic testing vs. medical testing

But, bioethicists and California state officials intervened, saying the DNA sampling amounted to medical testing and needed to be monitored more carefully. U-C Berkeley had planned to keep the results confidential by giving each student two barcode stickers - one to keep, and one to put on their testing vial. Then, students could confidentially compare the barcodes and view their personal results on the Web. "It’s a bad precedent to set up mass testing without some sort of counseling support,” Arthur Caplan, director of the Center for Bioethics at the University of Pennsylvania, told the New York Times. “I’d rather people get their results in a medical setting, where they can ask questions about the error rate or the chances of passing it on to their children, and not just see it posted on some Web site.”

Personalized medicine could become more popular

UC Berkeley officials say the “Bring Your Genes to Cal” project was supposed to foster discussion among students about personalized medicine, a phenomenon that could very likely become part of their futures. After scientists mapped the human genome , many thought it was only a matter of time before people would be receiving medical treatment based on their unique genetic make-ups. While several private companies have begun offering genetic testing, the science behind it is still evolving and some physicians are worried about what the authors of a recent article in the New England Journal of Medicine called “recreational genomics.” They fear that patients who seek commercial genetic testing might be told information about their chances of getting diseases like cancer or heart disease that isn't scientifically sound. Alexander Capron, a professor of law and medicine at the University of Southern California, told PBS’s Religion & Ethics Newsweekly that people might not know what to do with genetic information when it is presented to them. He fears they could base job, family and life decisions off of genetic testing that is, currently, private and unregulated by any government body like the Food and Drug Administration (FDA). “I think we are still in early days on the regulation side, and the FDA has more work to do here,” Capron said. “The field has grown, I think, faster than anyone expected.” --Compiled by Veronica DeVore for NewsHour Extra