Last updated: February 28, 2012
Existing Federal Anti-Discrimination Laws and How They Apply to Genetics
Americans with Disabilities Act of 1990 (ADA)
Title I of the Americans with Disabilities Act (ADA), and similar disability-based anti-discrimination laws such as the Rehabilitation Act of 1973, do not explicitly address genetic information, but they provide some protections in the workplace.
The Americans with Disabilities Act:
- Prohibits discrimination against a person who is regarded as having a disability.
- Protects individuals with symptomatic genetic disabilities.
- Does not protect against discrimination based on unexpressed genetic conditions.
- Does not protect potential workers from requirements or requests to provide genetic information to their employers after a conditional offer of employment.
- Does not protect workers from requirements to provide medical information that is job related and consistent with business necessity.
In March 1995, the Equal Employment Opportunity Commission (EEOC) issued an interpretation of the ADA. The guidance, however, is limited in scope and legal effect. It is policy guidance that does not have the same legal binding effect on a court, as does a statute or regulation, and it has not been tested in court.
According to the interpretation:
- Entities that discriminate on the basis of genetic predisposition are treating the individuals as having impairments, which would make such individuals covered by the ADA.
- The ADA does not cover unaffected carriers of recessive and X-linked disorders, individuals who genetic testing or family history may identify as being at high risk of developing late onset genetic disorders.
Health Insurance Portability and Accountability Act of 1996 (HIPAA)
- Applies to employer-based and commercially issued group health insurance only. HIPAA is the only federal law that directly addresses the issue of genetic discrimination. There is no similar law applying to private individuals seeking health insurance in the individual market.
- Prohibits group health plans from using any health status-related factor, including genetic information, as a basis for denying or limiting eligibility for coverage or for increasing premiums.
- Limits exclusions for preexisting conditions in group health plans to 12 months and prohibits such exclusions if the individual has been covered previously for that condition for 12 months or more.
- States explicitly that genetic information in the absence of a current diagnosis of illness shall not be considered a preexisting condition.
- Does not prohibit employers from refusing to offer health coverage.
HIPAA National Standards to Protect Patients' Personal Medical Records 2002
This regulation protects medical records and other personal health information maintained by health care providers, hospitals, health plans, health insurers, and health care clearinghouses. The regulation was mandated when Congress failed to pass comprehensive privacy legislation (as required by HIPAA) by 1999. The new standards: limit the nonconsensual use and release of private health information; give patients new rights to access their medical records and to know who else has accessed them; restrict most disclosure of health information to the minimum needed for the intended purpose; establish new criminal and civil sanctions for improper use or disclosure; and establish new requirements for access to records by researchers and others. These standards are not specific to genetics; rather they are sweeping regulations governing all personal health information.
Title VII of the Civil Rights Act of 1964
- An argument could be made that genetic discrimination based on "racially or ethnically linked" genetic disorders constitutes unlawful race or ethnicity discrimination.
- Protection is available only where an employer engages in discrimination based on a genetic trait that is substantially related to a particular race or ethnic group.
- A strong relationship between race or national origin has been established for only a few diseases.
Last Reviewed: February 28, 2012