Freshmen in the University of California Berkeley’s College of Letters and Science will be asked to take part in a novel program designed, it is said, to stimulate discussion of personalized medicine. That kind of medicine–hailed by many in health care as potentially revolutionary–focuses on genetic screening to determine an individual’s susceptibility to various diseases and other medical conditions. The students will be asked to provide a sample of cells from their inner cheek, and those cells will be analyzed for three genes, each bearing on possibly beneficial changes in what they eat and drink.
Organizers of the projects, scientists working on genetics, think that this project will be more stimulating to students than old-fashioned reading, a commonplace for incoming freshmen in the past. I doubt it, and in fact it has the potential for some ethical mischief.
On the surface it looks innocuous enough: the program is voluntary, the information is kept private, the ethics review committee approved it, and it will be followed by lectures and panels on personalized medicine. But the history of screening for genetic diseases and individual genetic variations has been beset with problems, medical and psychological.
Missing from this project, it appears, is any provision for individual genetic counseling, now taken to be a minimal requirement for screening. Even with other otherwise harmless screening, individuals respond differently, often with anxiety and uncertainty. Just how students will respond to the findings about their own genetic proclivities is unknown and unpredictable. At the least some pilot studies should have been undertaken. Moreover, just what kind of information, and it what detail, will be given the students is unclear. They can hardly give informed consent–a basic requirement for participation in medical research—without detailed information to understand the possible benefits and the possible harms, particularly the latter.
Most disturbing, however, is the flavor of hucksterism for this emerging form of medicine. The offer to students of a chance to compete for some more comprehensive personal gene scans, often expensive and privately marketed, together with the effort of the organizing geneticists to publicize the field, ought to raise a red flag among the Berkeley faculty: is this what a university should be doing with its freshmen?
Personalized medicine surely has some possibilities for providing useful information. It has already done so in some cases, such as screening for single gene disorders, such as Tay-Sachs disease, Huntington’s Chorea, and for some breast cancers. But much of the personalized medicine will focus on multi-gene conditions, far more common, such as Alzheimer’s or alcoholism. In those cases, the most that can usually be said is that someone with some genetic indicators for those conditions may have an elevated risk, but of unknown strength and uncertain onset. In many cases there will be no known treatment, and the number of such cases will increase exponentially as more conditions with a genetic component are discovered.
For many years, scientists have warned against the dangers of genetic determinism, noting the difficulty of dealing with multi-gene conditions and emphasizing how environmental conditions will have much to do with how they are expressed. The Berkeley project seems almost certain to leave otherwise uneducated students with the belief in genetic determinism, pushed along now by some geneticists whose enthusiasm for personalized medicine outruns their common sense and the important cautions about it all voiced by responsible scientists.
Daniel Callahan is a Senior Scholar and President Emeritus of The Hastings Center and the author, most recently, of Taming the Beloved Beast: How Medical Technology Costs Are Destroying Our Health Care System (Princeton University Press).