Genetic Discrimination

The potentially stigmatizing nature of genetic information and its history of abuse necessitate special provisions for its protection. Although the U.S. Supreme Court has established a basic right to privacy (in the case of Roe v. Wade), the nonspecific nature of this privacy protection fails to adequately guard against the unauthorized disclosure of personal genetic information.

There have been reports that genetic discrimination has been practiced by employers and insurers who are afraid of being required to cover the potentially high medical expenses of individuals who have a family history of a genetically inheritable disease, even if those individuals exhibit no symptoms of the actual disease. However, recent debate suggests that the actual occurrence of genetic discrimination has not yet been proven and that the perception of risk is exaggerated. Nevertheless, researchers working in human genetics should proceed under the assumption of potential harm and should therefore keep confidential all information that they collect or generate as part of any family study they conduct.