The University of California Berkeley was planning an innovative and somewhat controversial “common freshman experience” for its incoming class. Rather than forcing everyone to read some book no one really likes written by their professor (*cough*Purdue*cough*), they decided to let freshmen voluntarily be tested for various benign yet interesting genetic traits. It’s purpose was to start dialogue on the future of genetic testing and personalized genomics.
However, the California Department of Public Health has recently decided that students are not to receive their personalized results, and only aggregate data can be presented:
“They said that we were providing students with information that could affect the treatment of disease or the evaluation of health,” said Mark Schlissel, dean of biological sciences in Berkeley’s College of Letters and Science. “We disagree with the California Department of Public Health.”
According to the department, laboratories conducting clinical testing — which can diagnose a disease or monitor treatment — must be licensed and have certification for reliability and accuracy. Excluded are labs running samples for research and teaching purposes, but the Department of Public Health concluded that Berkeley’s project does not fit these exemptions due to the potential for medical interpretation.
The university’s collection of genetic samples targets only three genes: metabolism of folate, tolerance of lactose and metabolism of alcohol. Jasper Rine, UC Berkeley professor of genetics, genomics and development, said the gene variants are innocuous.
“We considered all possible misuses of this information,” he said. “We decided we could manage the risk that a student could learn that they have an upset stomach when they drink milk.”
[...]“It opens up a whole lot of questions,” [Schlissel] said. “Who has the authority to tell an individual what they’re allowed to know about themselves?”
As a geneticist, this is an interesting situation to me. If I was a UC Berkeley freshman, I would be extremely disappointed. One, I’m a genetics nerd – I’d love to know what my variants were! Two, I was told I was getting personal results – maybe I wouldn’t have participated if I would have known it was aggregate data. Three, this was completely voluntary and testing innocuous traits. If I want to know this about myself, I think I have to right to know.
But on the more general topic of genetic testing, we’re right to be wary. Personal genomics relies a lot on incomplete data and probability. Vary rarely do you have a specific gene variant that results in a certain trait or disease 100% of the time. More likely, a certain variant will say you have a 20% more likely chance of suffering from heart disease, or 35% less chance of having diabetes. That and genomics is a very new field – you may have an allele that greatly increases your risk for a certain disease, but a researcher just hasn’t discovered that yet. Does having that false sense of security negatively affect how you act?
I’m eager to get my personalized genome once I can actually afford it (so, it may not be for a while). As a geneticist, I understand how to interpret the probabilities and uncertainties, and the knowledge I get in return is worth it. But the concern is that many people who rush to sequence their genome don’t understand the probabilities, and no one is there to help them. Companies will happily sequence your genome (read: Take your money), but rarely do you have a genetic counselor there to explain the results.
Is the UC Berkeley project quite as dangerous as learning about heart disease, diabetes, and Huntington’s disease? Not exactly – they were testing for traits you probably would have already known about. Most of us are aware if we’re somewhat lactose intolerant or not as able to metabolize alcohol (you may know it as the “Asian” alcohol flush reaction). But these are concerns I’m sure we’re going to be hearing a lot more of in the future, as genetic testing becomes more and more prevalent.