Setting margins for genetic privacy

Advances in genetic technologies are creating greater opportunities for beneficial biomedical interventions. However, our increased understanding of the impact of genotype on phenotype, and the enhanced ability to derive information from a single individual about biologically related persons, gives rise to a range of ethical, legal, and social issues. Foremost among these issues is privacy. Regulating the dissemination of genetic information faces considerable challenges when potential individual and collective health benefits are weighed against individual privacy interests. This work applies an interdisciplinary approach, drawing from law, philosophy, sociology, and history, to provide a contextual analysis of privacy interests and the optimal means of regulation. It makes the case for greater consideration of alternative approaches to codification of diminished individual privacy interests. Instead, it advocates increased use of social norms as a way of gaining the considerable positive benefits of genetic advancements without irreversibly sacrificing individual privacy rights. Chapter 1 explores comparative approaches to unconsented disclosure of genetic test results to relatives. It offers a normative analysis of discretionary disclosure, a policy that would allow the disclosure of test results to relatives for whom there may be an elevated risk of disease. It concludes that this policy is problematic and, ultimately, counterproductive. Chapter 2 examines shifts in privacy norms occasioned by the advances in genetic technologies and identifies a spillover effect in the form of the inadvertent emergence of new norms. This chapter introduces an original taxonomy developed in response to these new norms regarding privacy. It focuses on the emerging practice of compelling access to genetic information of biologically-related persons in order to gain information about a particular individual. It concludes that greater attention should be given to the spillover effect and the emergence of "shadow norms". Chapter 3 explores the force of comparative privacy protections between selected European countries and the United States. I contrast Europe's application of the proportionality principle with the U.S. model of categorical protections. Does the seemingly more flexible European approach provide lesser or greater protection than the U.S. categorical model? I conclude that architecture alone is not determinative.