Genetic education: Reflections on Berkeley's student gene-testing program
Geneticist Jasper Rine reflects on a controversial gene-testing programme.
September 21, 2010 | 2
By Zoë Corbyn
An ethical storm hit the University of California, Berkeley, earlier this year after it invited more than 5,000 incoming students to receive a personal genetic analysis of three genes associated with how they metabolize lactose, alcohol and folic acid.
Privacy fears led to a public outcry and a bill in the California legislature to block the program. That effort failed, but the California Department of Public Health has since ruled that federal law prohibits the university from giving students their individual results.
Last week, Jasper Rine, a geneticist and one of the project's leaders, went as far as the department would allow by presenting the amalgamated test results of the 724 student participants. Nature News asks Rine to reflect on the program, the controversy and what remains to be resolved.
Why was Berkeley so keen to push the boundaries in the first place?
Next-generation DNA-sequencing developments will push the cost of DNA sequencing down to the point that anyone can afford to have complete knowledge of their personal gene variants. Yet there is a gulf between that knowledge and an understanding of what the genetic variations mean. It is the responsibility of the great universities of the world to confront major societal challenges such as this so that our students can exercise good judgment, informed by facts.
Were you surprised by the public outcry?
We expected this topic to engage the intellect and passions of a wide audience, but the number of critics and press articles that completely misunderstood and misrepresented what we are doing was surprising. This led to the further surprise of a few members of the legislature trying to regulate the teaching mission of the university. But the biggest surprise was that the California Department of Public Health refused to apply the explicit exemption written into the law for laboratory tests done in a purely teaching environment. The department has still failed to provide any reasoning behind their position other than their peculiar reading of the relevant statute.
Does the decision by the California Department of Public Health have wider implications?
Their ruling could have devastating impacts around the state and could work against public health. For example, if one of my colleagues studying lead levels in the blood of migrant farm workers discovers, in the course of their lab tests, a child with toxic levels of lead, the ruling precludes them from telling the family that their child should see a doctor.
Some faculty expressed ethical concerns about the program--should more have been done to consult them in the first place?
The idea for this program came from the deans of the College of Letters & Science, so the interests of all faculty in the college were represented by their deans. In addition, the program was fully vetted by the Committee for the Protection of Human Subjects, which also has broad faculty representation. There are approximately 1,450 faculty on campus, of which 750 are in the College of Letters & Science. The teaching programs of individual faculty members have never been reviewed by all faculty, nor should they be.
Has anything been gained from the controversy?
If anything, the controversy has been a big plus for the program as it brought home to the students how important the things we teach them really are. I don't think I could possibly have breathed as much passion into it without the concerted efforts of the critics. Colleagues at other campuses expressed appreciation that we pioneered this effort and solicited advice on how they might try something like this at their campus.
You have put a lot of yourself into the program--even having your own genes tested for a range of diseases to present the results to the students--what has driven you to get so involved?
We all have a fundamental right to know about ourselves. That right needs to be coupled with the means of understanding, and that is an important role for universities. Ignorance is never illuminating. The importance of the issues surrounding personal genetic information are obvious, and knowledge trumps fear, but it sometimes takes a while.
Genetic education: Reflections on Berkeley's student gene-testing program: Scientific American