Rhode Island Department of Health Genetics Website

Health Insurance & Legislation

Federal Legislation

Federal legislation has not been passed to protect people from genetic discrimination in individual insurance coverage or in the workplace. Several bills were introduced during the last decade. The primary public concerns are that:

• insurers will use genetic information to deny, limit, or cancel insurance policies, or
• employers will use genetic information against existing or potential workers potential.

In February 2000, U.S. President Clinton signed an executive order prohibiting every federal department and agency from using genetic information in any hiring or promotion action. Phrma Genomics has information regarding current federal legislation regarding genetics.

There are existing federal laws regarding nondiscrimination, and parts of these laws could be interpreted to include genetic information.

• Americans with Disabilities Act of 1990 (ADA)

The question is whether or not an unexpressed genetic condition can be considered a disability. The Americans with Disabilities Act does protect individuals who are regarded as having an impairment, but there is concern that genetic discrimination is different enough from traditional disability discrimination to fall outside of the protections of the ADA. The fear is that an employer or insurer could discriminate against individuals with certain genetic predispositions, because in order to fall within the ADA, an institution that regards an individual as impaired must regard that individual as being presently impaired. The ADA is enforced by the Equal Employment Opportunity Commission, (EEOC), which interprets the law as providing protection against genetic discrimination. This interpretation however, is limited in scope and legal effect, and the true protective power of the ADA against genetic discrimination has yet to be decided in court.

• Health Insurance Portability and Accountability Act of 1996 (HIPAA)

HIPAA was passed in order to protect individuals from losing health benefits when changing jobs. Health insurers have traditionally tried to lower costs by denying coverage for pre-existing conditions. HIPAA prohibits group health plans from using pre-existing conditions and genetic information as a basis for denying coverage or raising premiums. It protects an individual from losing coverage during a gap in group health insurance, but provides no protection for those that switch from one individual plan to another, and little protection for those who have not maintained continuous group health coverage.

• The Employee Retirement Income Security
  Act of 1974 (ERISA)

This federal law may allow genetic discrimination
because it preempts state laws. It provides regulationsfor employee welfare benefit plans, and was passed tomake it easier for national corporations to provide benefit
plans to employees in different states. By preempting
state laws, ERISA prevents such employers from having
to comply with many different state laws, and allows
them to follow one set of regulations for employees in
many different states. Many states have passed
legislation that protects against genetic discrimination
in insurance and employment, and the concern is that
these state laws may be preempted by ERISA, allowing
discrimination for self-funded employer benefit plans.
ERISA does provide one exception to the preemption
rule, and protects the right of states to regulate
insurance. ERISA preemptions do not apply to state
laws regulating insurance, but employer self-funded
health plans might not be considered as insurance.
(Large employers often do not purchase group health
insurance because their size eliminates the need
to pool their risks with other companies, and so they
offer a self-funded health plan instead, and pay the cost
of treatments themselves.) These issues will be decided
in court, and it is still unclear exactly to what extent
ERISA’s anti-discrimination clause applies to genetic
discrimination.

• 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.

For more information on these laws visit the Human Genome Project Information website. http://www.ornl.gov/hgmis/elsi/legislat.html