Turning Up the Awesome

The class of 2014 at Berkeley will be welcomed to campus their freshman fall with year long seminar type program called “Bring Your Genes to Cal. As part of the program, students can choose to submit their personal DNA and have it screened for three specific gene variants that affect how the body metabolizes and uses alcohol, folic acid (vitamin B9) and lactose.

Obviously this program has stirred up a cauldron of controversy – the three main points of which are nicely framed by Scientific American here.

Beyond this initial controversy, it will be absolutely fascinating to see how many students participate and hear their reactions to the program – we’re talking about a group of 17-18 year olds who are used to sharing personal information almost constantly with their peer group via Facebook, text messages, status updates, etc. Privacy barriers for this group of students are much lower than they were even five years ago. Many have probably been challenged to consider ideas of eugenics and genetic discrimination in their biology classes but are unlikely to have fully consider their  comfort levels around their own genetic data, particularly when encouraged to do so as part of college orientation. Will the students see this as an invasion of their personal privacy or just an extension of the social media share-fest already so ubiquitous in their lives?

This issue is critically important and its imperative that we each examine and understand where to draw lines when it comes to sharing personal health information. Done prudently and judiciously, the socializing and electronic aggregation of health information may provide a means to tackle previously intractable public health issues. However, technological advances clearly won’t slow down for policy makers to hash through the legal implications around the tidal wave of genetic information already available. Critics are correct that students are ill-prepared to make decisions about their genetic privacy and are even less ready to handle the information. However, with the pace of technology showing no signs of slowing, the process of rapidly evaluating, adapting and aligning ones ethos to new technology is a critical skill. I have no idea if the Berkeley administration was trying to give students a crash course in this kind of challenge or if they truly believed they were creating an ethical, measured, controllable program about personalized medicine. Their failure to achieve the latter however, and the ensuing reactions of the students and public, will provide a much broader (and perhaps even more valuable?) case study on the pitfalls of even the most well-intentioned genetic testing programs.