203079 Privacy, stigmatized conditions, and research with electronic administrative data

Monday, November 9, 2009

James Walkup, PhD , Graduate School of Applied and Professional Psychology at Rutgers University, Piscataway, NJ
Annette King , Ihhcpar, Rutgers University, New Brunswick, NJ
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.

Learning Objectives:
Evaluate policy and value issues associated with use of electronic administrative records for research.

Keywords: Health Information Systems, Policy/Policy Development

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: Clinical psychologist and health services researchers
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.

See more of: Ethics SPIG Poster Session
See more of: Ethics SPIG