Privacy and Health Research. 1. Coupled Societal Goods: Privacy and Research


At issue right now—as health care is rapidly becoming industrialized, collectivized, and computerized—is to what extent society will preserve the cherished tradition of patient–healthcare provider confidentiality with its many implications, and the related relationships of trust with those who perform health research.

Also at issue is whether the public's current apprehensiveness about invasions of privacy by various forces will result in "backlash" legal restrictions that will jeopardize aspects of health research, ultimately to society's detriment.

The policy and technical challenges are to devise improved ways for preserving individuals' informational privacy, while at the same time preserving justified research access to personal data in order to gain health benefits for society. Much is at stake.