Protecting privacy in the behavioral genetics era.

Genetic information is emerging as having great value for improving human health. At the same time, there is a growing concern among the public that it may be misused by a variety of third parties. For example, employers may rely on genetic information in making certain personnel decisions, such as whether to hire a particular job applicant or promote or terminate a current employee. Insurers may also use this information to deny, limit, or cancel coverage, as well as charge prohibitive rates. Similarly, managed care companies may deny health care coverage to patient populations judged as being genetically too risky. And, pharmaceutical companies may pay pharmacies to send out announcements about their genetically engineered medications to persons with genetic propensities to mental illnesses. The potential for misuse is increased by the common misconception that genes determine one's fate. However, a genetic disposition to a disease does not mean that a person will get that disease, but rather that he or she has an increased likelihood of getting it. Environmental factors, human choice, and personal attitudes about risk also play a central role in individual vulnerability to disease. President Bush recognized this potential for misuse. In announcing his plan to draft anti-genetic discrimination legislation, he cautioned that the genetic data made available by the decoding of the human genome "has the potential to be abused."1 Moreover, the Human Genome Project (HGP)?a 13-year international research effort launched in 1990 and coordinated by the U.S. Department of Energy and the National Institutes of Health?raised public awareness as one of the first large scientific undertakings to research the ethical, legal, and social implications that may arise from knowledge about human genetic make-up. HGP's goal was "to identify the approximately 35,000 genes in human DNA and to map out and sequence the three billion chemical base pairs that make up human DNA."2