The Genetic Privacy Carousel: A Discourse on Proposed Genetic Privacy Bills and the Co-Evolution of Law and Science

Edward      S. Dove

Abstract

In 2011, genetic privacy bills were introduced in two US states proposing that genetic information and material are an individuals exclusive property. Using the bills as a catalyst for broader discussion, the author introduces several themes. On a primary level, the scientific, medical, and broader community should be cognizant of the bills as they may be precursors to new legislation with potential future impact on genomics and personalized medicine. Their privacy-through-property approach contains definitional ambiguities (such as using the legal phraseology of “real property”), erects barriers to research and innovation, differs conceptually and procedurally from current genetic privacy legislation, and could herald a return to reductionist genetic exceptionalism. Since genetic research and personalized medicine operate in a borderless (transnational) world where natural and social system divisions are highly porous, patchwork legislation can impede advancement of knowledge transfer, health outcome delivery, and international harmonization and coordination. While these are US bills, they can set precedence with potential traction in globally networked innovation ecosystems that share, and are shaped by, legislation and international norms. Too often, law and science are artificially situated in silos. Yet law is not a disembodied system of ideas; it is a corpus embedded in a larger social structure that includes science and personalized medicine. Broader elements of society must be engaged and educated from the earliest stage of legal reform so that future legislation that impacts genomics and personalized medicine can be steered in a form more closely tuned to social values and the lessons learned from the past history of genetic/genomics research.

Keywords: Bill, culture, discrimination and genetic privacy, genomics and public policy, law and science, law and society, legislation, upstream engagement in law, science and personalized medicine