Privacy, stigmatized conditions, and research with electronic administrative data

High visibility security breaches by researchers using administrative datafiles have heightened concern over violations of patient privacy. At the same time efforts have increased to expand routine reliance on standardized electronic medical records, which provide multiple opportunities for improvements in a number of areas of research relevant to public health. The presentation argues that the existing structure of law, regulation, and human subjects review are insufficient to respond effectively to the challenges and opportunities presented by these developments.

An account is offered of cultural values and cognitive structures responsible for strong aversion to so-called “taboo trade-offs,” (Baron, Fiske) including those that frame conflicts between rights and various species of utilities. Despite the strength of rights-preserving intuitions in this area, consideration of a range of countervailing utility judgments is capable of destabilizing these intuitions. The impact of various kinds of costs will be reviewed: expenses added to research; sacrifices in quality, precision, generalizability of research findings; time required to reach conclusions; costs calculated as time to identification of efficacious agents, reaching threshold for safety evaluation, identification of adverse events, etc.