Genetic privacy: from the laboratory to the legislature.

Over the past few years, I have often been approached by researchers who tell me that they wonder if they are doing the right thing by looking for this or that disease gene. They are often motivated in their work by the important goal of ultimately being able to cure devastating diseases. Yet, at the same time, they realize that there is generally a lengthy gap between the availability of genetic testing and the development of a treatment. They worry about what happens when testing starts on the patients and they become uninsurable or unemployable as a result of genetic knowledge. The concern of researchers is shared by members of the public. An April 1995 Harris Poll found that 86% of people are concerned about the prospect of employers and insurers using genetic tests before deciding whether to hire or insure someone. Such possibilities led Congressman Obey, at the National Institutes of Health (NIH) Reauthorization hearings, to ask Francis Collins, director of the Human Genome Project, whether there should be a ban on NIH grants to researchers in states that do not have laws protecting genetic privacy. The purpose of this article is to explore the reasons why genetic information is particularly sensitive and to develop a policy framework for protecting genetic privacy. The need for protection of genetic information is due, in part, to its unique nature and history. George Annas describes its importance by saying that "The highly personal nature of the information contained in DNA can be illustrated by thinking of DNA as containing an individual's 'future diary.' A diary is perhaps the most personal and private document a person can create. It contains a person's innermost thoughts and perceptions and is usually hidden and locked to assure its secrecy. Diaries describe the past. The information in one's