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.
Antidiscrimination Legislation
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.
Present Problems and Potential Solutions
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.
Bibliography
Internet Resource
"The Potential for Discrimination in Health Insurance Based on Prescriptive Genetic Tests." U.S. Congress. http://energycommerce.house.gov/107/hearings/07112001Hearing322/hearing.htm.
—Chantelle Wolpert
