Center for Health, Science & Public Policy Program Considers “the Good Biocitizen”

Scientists, scholars and practitioners convened at the Law School in October for a two-day symposium sponsored by the Center for Health, Science & Public Policy that explored important ethical issues raised by genomic knowledge. Today, access to genetic information has become so commonplace that anyone can pay a genetic testing company, such as 23andMe, for detailed information about their genetic make-up. However, as 23andMe warns prospective customers, “this knowledge is irrevocable.” The warning goes to the heart of an ethical debate. On the one hand, genomic knowledge is a gift, offering insights into genetic diseases and the paths of our ancestors. On the other, it is a weight, creating new obligations, new forms of social classification, and new forms of surveillance.

“The Gift and Weight of Genomic Knowledge—In Search of the Good Biocitizen,” was presented in collaboration with the Hastings Center and also co-sponsored by Columbia University’s Department of Medical Humanities and Ethics and Harvard Medical School’s Center for Bioethics.

“It is bold to raise questions that challenge normative ideas, and, although it shouldn’t be, it is particularly bold to raise questions of equality, identity, and belonging,” said Professor Karen Porter, Executive Director of the center, in her opening remarks.

Scholars and researchers from leading institutions in the field such as Princeton University, the University of California, San Francisco, and the University of Alberta, Canada, discussed various aspects of genomic knowledge, such as precision health, intersex conditions, justice and democracy, and race. For example, Erik Parens, Senior Research Scholar at the Hastings Center, who led the event with Professor Joel Reynolds of University of Massachusetts Lowell, used race to illustrate the ethical quandary. On one hand, African Americans can use genetic knowledge to establish links to the countries from which their ancestors were stolen. On the other hand, this information can be used by racists as a justification for discrimination. He urged the audience to “aspire to a binocular comprehension of genomic knowledge and look through the weight lens more than usual.”

“The Center for Health, Science & Public Policy strives to offer programs that inform the public and encourage scholarship and research to improve the integrity of science,” said Porter. “We do this by partnering with programs and people, such as the Hastings Center and other participants of this symposium, who are moving health care and science into the future. Together we hope to advance technology and clarify the duties and obligations of our health care system.”

Since it was founded in 2002, the Center has become a leading resource for interdisciplinary dialogue among theoreticians and practitioners. Its symposia, seminars and workshops foster collaborative work on the most critical issues of the day.

View videos of the sessions here.