Ethics and genetics in the digital age
When five Texas parents found out in 2009 that the Department of State Health Services had saved DNA samples collected through its newborn screening program and was sharing them with researchers (and, as it turns out, federal investigators), they sued the state. The complex case, involving health care policy, consent, medical research, forensics, and civil rights, exemplified the debate that is unfolding nationwide over privacy and autonomy in genetics. The class-action lawsuit, which resulted in the incineration of more than 4 million blood samples, stirred a range of reactions among experts in medical ethics, law, public policy, research, and entrepreneurship during a symposium on “Privacy, Autonomy, and Personal Genetic Information in the Digital Age” held April 14. Organized by Cherry A. Murray, dean of the Harvard School of Engineering and Applied Sciences (SEAS), and co-hosted by the American Academy of Arts and Sciences in Cambridge, two panel discussions examined the “promise and perils”...