Cracking Open Genetic Privacy
Margaret R. McLean, Ph.D., is director of bioethics and associate director of the Markkula Center for Applied Ethics, Santa Clara University. She writes:
Almost a decade after the Human Genome Project cracked the genetic code, the wall of privacy surrounding genetic information may be developing a few cracks of its own. This is not such a bad thing, perhaps, as it forces us to confront important questions about what constitutes privacy, its value, and whether robust protection of genetic privacy is a promise that cannot—maybe ought not—be kept. Traditional notions of the privacy of medical information are profoundly challenged by genetic tests that reveal things not only about individuals but also about families, something that a family member may or may not already know.
Privacy—the expectation that access to certain information is limited—appears to be ethically neutral, merely describing a person’s anticipated ability to control access to personal information. When I affix my signature to a document, knowingly giving my employer access to my medical records, there is no ethical breach.[…]
Reaching ethical conclusions about genetic privacy is challenging for two reasons: First, it is inherently difficult to understand the subtleties of genetics and genetic interactions. Second, it is complicated to accurately predict the implications and consequences—short- and long-term, intended and unintended—of amassing volumes of genetic data in pursuit of a better understanding of disease or the development of individually tailored pharmaceuticals.
Read more of her commentary on GEN.