THE NEED FOR ANONYMOUS GENETIC-COUNSELING AND TESTING

Concerns are mounting about the risks of genetic discrimination result ing from the release of predictive and presymptomatic genetic test res ults to employers, insurers, and others. The ability to keep this info rmation confidential is questionable, particularly in view of the expa nsion of electronic medical databases. One solution is to afford indiv iduals access to anonymous genetic counseling and testing. Probands wo uld be identified only by a code that would not reveal personal inform ation, and test results would be stored, retrieved, and released solel y on the basis of this code. The experience with anonymous HIV testing , while not completely analogous, suggests that such an approach would be both practical and effective.