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Tuesday, August 17, 2010

UC Berkeley DNA Testing Debacle

Officials at UC Berkeley, in connection with an orientation and year-long program on  "personalized medicine," sent letters and DNA test kits to 5,000+ incoming freshmen and transfer students.  It asked students to return a saliva sample in the test kit, so that their DNA could be tested for the presence of genes involved in the processing of three substances: alcohol, folic acid (vitamin B9), and lactose.  The students were also asked to sign a consent form authorizing the testing, and were advised that they would be given their test results, but their DNA information would otherwise remain private. 

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:

  1. Was this testing for medical purposes, or simply for "educational and research purposes" as stated by the university?
  2. Had the students been fully informed of their right to refuse the testing, and of any risks involved in the testing?  
  3. Would the genetic information be protected sufficiently so as to keep it from being accessible by outside parties?
The California State Assembly's Committee on Higher Education held hearings to question Berkeley officials about the DNA testing, and specifically about plans to safeguard the privacy of student genetic information.  Then the state's Dept of Public Health held hearings about the testing program, and concluded that, since students are to be informed of their individual test results, the testing is not merely for educational and research purposes but is more akin to testing done for medical purposes.  Therefore, the testing is subject to state laws and regulations assuring accuracy, and may be done only by appropriately licensed labs and not by university technicians.  Since this would make the testing prohibitively expensive for the university, it has decided not to provide individual test results to students, and to use only general information about the results in orientation seminars.  Also, as was originally planned, Berkeley will destroy all DNA samples after the testing is done, so that students' genetic information will be kept private.

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;, articles by Matt Krupnick

1 comment:

  1. I appreciate having a forum for these critical matters. Having experienced the death of my mother last year, with her illness, discussions with family and her doctor, I understand how critically important it is to consider these issues BEFORE a crisis. Excellent.