Privacy and Health Research. Executive Summary


This Report examines how society can best pursue two very important goods simultaneously: Protect individuals' privacy; and at the same time, preserve justified research access to personal health data, to gain health benefits for society.

As the fundamental nature of health care, and of health data and their uses, is changing dramatically, society must—now—examine and re-decide how much it cares about protecting health privacy. Health researchers must be certain that they are taking all reasonable measures to safeguard the data they collect and use, and to maintain the respect for privacy that is embodied in the very compact with society under which they work. And society must reformulate and update some of the rationales and criteria under which the health experience of individuals may be studied to benefit society.

Health research, compared with all the other potential avenues for intrusion, hardly threatens privacy. Many effective protections are in place. But possibilities for harm always exist. The challenge is to transpose and translate the traditional ethical and technical practices, which have served society reasonably well, to meet the contemporary demands.