Genetic Discrimination

The Rehabilitation Act of 1973 was the first law to prohibit employment discrimination by federally funded agencies and institutions based on physical disability. The 1992 reauthorization of this legislation defines an "individual with a disability" as any person who "is regarded as having impairment." Such a definition is broad enough to include an asymptomatic gene carrier who is perceived as being "sick" by an employer or insurer. For example, carriers of the trait for sickle cell disease may be "regarded" as having the disease, even if they show no symptoms of it. In some cases, such individuals have been denied health insurance because they were inappropriately viewed as having a preexisting condition, that is, as actually having the disease, rather than simply carrying the gene for it.

The 1990 Americans with Disabilities Act (ADA) significantly broadened the scope of the 1973 legislation by prohibiting discrimination against disabled individuals in most areas of employment and with regard to access to public transportation. While the ADA's definition of disability excludes people with a "characteristic predisposition to illness or disease," some professionals believe that the legislation allots sufficient protection against genetic discrimination in the workplace.

Nonetheless, there is disagreement about whether people with a genetic predisposition to disease are adequately protected under the ADA. However, a recent ruling by the Equal Employment Opportunity Commission has interpreted the ADA to include the protection of individuals from employer discrimination based on genetic test results. The debate has not yet been fully resolved. For instance, there is still the potential for employers to institute genetic screening programs prior to offering employment. Thus, the municipal, state, and federal judiciaries will be called on to define the extent of the ADA legislation in their respective precincts in future cases.

Although the ADA prohibits employer discrimination, this law, along with the majority of state laws, does not adequately protect those with genetic disorders, whether symptomatic or asymptomatic, against discrimination by insurers. Thus, even though employers are prohibited from discriminating against workers with genetic disorders, the employment opportunities for such persons may still be limited. This is because employers could refuse to hire such individuals on the grounds that their insurance premiums would be too high.

Several states have attempted to address this problem by passing laws protecting individuals from genetic discrimination by health insurers. However, these laws generally fail to offer comprehensive protection to all people at risk for genetic discrimination. Depending on the way an individual law is worded, healthy gene carriers; people who are predisposed to certain genetic disorders such as cancer; and people who are at a high risk of developing a genetic disorder due to family medical history, rather than because of a detected gene mutation may all be excluded from the protection the law is intended to provide. For instance, Section 514 of the federal Employee Retirement Income Security Act (ERISA) exempts self-insured health benefit plans from state insurance laws, so the employees of companies that participate in such plans have no protection. Many employers, especially small businesses, are self-insured, and rely upon commercial insurance companies to administer their health plans. These employer-funded self-insurance plans qualify for the ERISA exemption, and therefore do not have to comply with state mandates for services or state laws regarding genetic discrimination, involuntary testing, or privacy.