Commercialization of the Human Genome_Issues of Privacy and Protection

Last week, the California Department of Public Health (CDPH) instructed UC Berkeley to modify its “Bring Your Genes to Cal” program. From the beginning, UCB’s controversial plan to test the DNA of incoming freshman for three genes, brought into bold relief many of the complex questions that engulf emerging biotechnologies, for example: how best to protect privacy rights; informed consent; the integrity of medical testing and research; and how to identify and reduce conflicts of interest?

Mark Schlissel, UC Berkeley’s dean of biological sciences, underscored another issue likely to be the subject of ongoing consideration: academic freedom. Defending the UCB program against the CDPH’s interpretation of relevant law, Schlissel declared that, "We have taken every precaution and are committed to following the letter of the law…, but we believe this is a flawed reading of the statute that raises questions about who has control over teaching at the university…" How expansively we view academic freedom depends, in part, on recognizing the conflicts of interest that exist on the part of those doing the “teaching.”

Deep structural conflicts of interest exist when science-entrepreneurs, who may stand to benefit downstream from emerging biotechnologies, use their positions as university academics to normalize the commercialization of those technologies. UCB’s press release describes the lead professor associated with the program, Jasper Rine, as a “genetics professor.” Yet he, like many of his academic colleagues, has strong commercial ties to the industry developing genetic technologies. Rine has served on the advisory boards of a number of biotech companies and has co-founded several California biotech companies, including his own genetics testing company. UCB’s implicit endorsement of genetic testing as consumerism is especially audacious given the serious criticism that this type of testing has come under. Testifying at last week’s California Assembly Committee on Higher Education oversight hearing, Council for Responsible Genetics President, Jeremy Gruber, related that federal sources had dubbed such testing “snake oil,” and “not ready for prime time.”

From the 1940's to the 1960's, Princeton, Yale, Wellesley, and many other elite universities required incoming freshman to participate in medical anthropology/eugenic research by posing nude for photographs designed to document posture and body type, seeking correlations between physique and temperament. Since then, in the clear-sightedness of another era, many such photos have been destroyed. But many yet remain. How much humiliation and trauma could have been prevented if more disinterested authority could have prevailed? Those incoming freshmen who laid bare their DNA revealed the most intimate biological information not only of themselves but of those related to them. They chose to do so without prior opportunity to discuss the ramifications of their decision, without full disclosure of the scope of the conflicts of interest involved, and without clarity as to when or how the information would ultimately be disposed. They, and those who come after them, need protection from the overzealous interests and conflicts of interest of the institutions in which they arrive, trusting, to learn.

M. L. Tina Stevens, PhD
Director, Alliance for Humane Biotechnology
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