Berkeley DNA plan draws ethics concerns

AUGUST 11, 2010

By LAURA SUCHESKI

Two professors from UC Berkeley testified before the Assembly Committee on Higher Education Tuesday, answering some questions about their controversial “Bring Your Genes to Cal” freshmen orientation project, but spurring new questions into the ethics of the program.

Dr. Mark Schlissel, Dean of Biological Sciences at Berkeley and his colleague Dr. Jasper Rine, a professor of genetics and genomics,  gave a brief description of the project they helped design to “spark engagement” in incoming freshmen.

The university mailed a letter to its incoming freshman describing the annual “On the Same Page” program.  Students may voluntarily submit a saliva sample for genetic analysis of three relatively “innocuous” traits.   Students under 18 need parental consent to participate.   The school sent out 5,000 letters and since has received around 400 samples in return.

The program has gained national attention from privacy groups, scientists, and members of both parties because of the concerns it raises for individual privacy and its link to the development of controversial direct-to-consumer genetic testing products.

The two professors attempted to answer many questions posed by the media. UC Berkeley had been reluctant to identify the source of funding for the expensive project, which will require individual testing of DNA samples.  During the hearing, university officials identified the funding source, Howard Hughes Medical Institute, for the first time.   The answer seemed to satisfy the Assembly members and other panelists, who had been worried the university was concealing anonymous donations from private interests in promoting direct-to-consumer genetics.    That could represent a conflict of interest for the professors, who are involved in personal private ventures in genetic testing and personalized medicine.

Direct-to-consumer genetics products, now being offered by private firms such as 23 And Me, have raised a number of issues.  For $499, you can have your DNA analyzed, which will tell you how likely you are to contract certain diseases.   However, many federal agencies object to the procedure, saying that it is still in its infancy and has not proven reliable.  The FDA does not sanction genetic testing.  The American Medical Association worries that a lack of counseling about genetic conclusions can lead consumers to make poorly-informed choices.

In the hearing, these issues were raised, and Dr. Hank Greeley, the director at Stanford University’s Center for Law and the Biosciences compared the Berkeley program to a similar class taught at Stanford.  In comparison, Stanford’s program is only available to graduate and medical students, who are counseled for two classes before having an opportunity to submit to genetic analysis.  Still, Greeley admits he voted against the class.

He says the Berkeley program offers insufficient information and counseling to students who are subtly pressured into participating without knowing the risks or medical significance of the data.  “I don’t think the Berkeley program is evil,” he said, “but I would not have done it.”

Assemblywoman Jean Fuller, R-Bakersfield, objected to potential privacy breaches not addressed in the letter.  She fears that as a public agency, UC Berkeley risks divulging personal information to the public as part of public information regulations that could be eventually connected to dissected data.  Everything done by the public university could become public information, “including return addresses on the envelopes” used to return bar-coded samples.

Dr. Greeley similarly criticized the program, wondering how students would access their specially coded data and guessing that the program planned to do it electronically.  If students access their information over the Internet, special safeguards need to be put in place to ensure that personal information does not link them to their results.

Jeremy Gruber, President of the Council for Responsible Genetics, worried that the subtly coercive nature of the program encourages students to participate in emerging personalized medicine technology, the accuracy and ethics of which are still hotly debated in scientific circles.   The FDA has ruled the tests inaccurate.

Gruber read aloud relevant portions of the mailer sent to incoming freshmen, which directs students to websites for 23 and Me “to obtain similar information.”   He argued that this constitutes implicit endorsement of direct-to-consumer genetic testing and personalized medicine.

Implicit endorsement it may be, but remains to be determined whether that is a valid objection to the program in and of itself.  It may be just another way our universities push the envelope into developing, often controversial technologies, and it certainly isn’t the most controversial thing public universities have endorsed.

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