DNA profiling and databasing are now commonplace. A body of state and federal legislation enables the establishment and operation of profile databases for law-enforcement purposes. Enabling legislation is usually specific about who, or what evidence, may be profiled for a database. It may be less specific or silent on the issue of specimen retention following profiling and databasing.

I begin with a discussion of the value of privacy and what we lose without it. I then turn to the difficulties of preserving privacy for genetic information and other medical records in the face of advanced information technology. I suggest three alternative public policy approaches to the problem of protecting individual privacy and also preserving databases for genetic research:(1) governmental guidelines and centralized databases, (2) corporate self-regulation, and (3) my hybrid approach. None of these are unproblematic; I discuss strengths (...) and drawbacks of each, emphasizing the importance of protecting the privacy of sensitive medical and genetic information as well as letting information technology flourish to aid patient care, public health and scientific research. (shrink)