Genetic Discrimination

There is one federal act related to genetic discrimination that overrides ERISA and therefore applies to all health plans, even those offered by small businesses. This federal act is called the Health Insurance Portability and Accountability Act (HIPAA). HIPAA specifies that if employees are covered by a group health insurance policy offered through their employer, they must be offered a similar policy when they change jobs. The new insurance company does not have to offer this coverage at the same rate as was offered by the old plan, but it cannot deny coverage by declaring the genetic disorder to be a "preexisting condition." In contrast, if a person is either unemployed or self-employed, there is no requirement that an insurer offer him or her a policy.

As information about genetic disorders rapidly expands, the potential harm from genetic discrimination also becomes magnified. As a result, there is increasing recognition of the need for federal legislation guaranteeing a right to genetic privacy. Working groups have been formed to evaluate the impact of genetic information on individual insurability and on the insurance industry. Among these groups are the American Society of Human Genetics' Ad Hoc Committee on Genetic Testing/Insurance Issues, and the Working Group on Ethical, Legal, and Social Implications of the Human Genome Project, which is jointly sponsored by the National Institutes of Health and the Department of Education. At the end of the twentieth century, congressional committees held hearings on these issues, and in February 2001 a bill was introduced that mandates genetic nondiscrimination in health insurance.