The science professors and administrators at Berkeley were completely surprised by the maelstrom of questions and criticism that erupted in response to the DNA testing plan. Bioethics experts, legislators, and the news media began asking questions as soon as word of the DNA test kits got out. Several concerns about this DNA testing came immediately to the forefront:
- Was this testing for medical purposes, or simply for "educational and research purposes" as stated by the university?
- Had the students been fully informed of their right to refuse the testing, and of any risks involved in the testing?
- Would the genetic information be protected sufficiently so as to keep it from being accessible by outside parties?
Berkeley's science professors and administrators have made noises about "academic freedom" and government interference with their rights as educators. The individual rights of the students were at issue here, too, but those in charge of the DNA testing program failed to give adequate thought to those rights. Perhaps that is because they were acting with good intent, in pursuit of an interesting educational opportunity for their students. But it might also be because some scientists act without giving due attention -- or any attention -- to ethical questions. It is not that they are unethical people, but that they are focused on the experiment, the quest, and not the question of whether the experiment is one we should undertake in the first place.
There are many capable ethics and bioethics experts at Berkeley who could have provided advice to their colleagues before the DNA testing program was launched. Clearly, those experts were not involved in the planning process, if they were consulted at all. And while Berkeley's Committee for Protection of Human Subjects reviewed the proposal for the testing program and approved it as posing minimal risk to students, I wonder whether that committee includes a member whose focus is ethics. It certainly should include such a member, and I can only hope that the university will see to that, and will ensure inclusion of ethics experts in the planning of any educational programs that include genetic or other health-related testing.
Sources: UC Berkeley news releases; L.A. Times, 8/13/10; www.contracostatimes.com, articles by Matt Krupnick