Genetic Testing and Discrimination in Health Insurance

By Mark A. Rothstein and Cheryl Erwin, candidate for J.D. 1999, President of Health Law Organization

Recent advances in genetic technology have made it possible to learn what genes we carry in our genetic code. Genetic tests could, for example, tell whether an individual had a mutation that causes Huntington disease, amotrophic lateral sclerosis (Lou Gehrig's disease), or a mutation that predisposes the individual to develop breast, colon, or some other form of cancer. For some conditions, individuals could increase their medical monitoring or minimize their exposure to harmful environmental factors. Yet, the threat of discrimination in employment, insurance and other areas (in addition to simply not wanting to know) may deter individuals from using genetic technologies to improve their health. A recent article pointed out that people are not rushing in great numbers for genetic testing as some had predicted. (New York Times, March 27, 1998).

The vast majority of people who decide not to have genetic testing refer to privacy concerns as the primary reason for their hesitation to learn their genetic makeup. Although discrimination in employment, life insurance, and other areas are raised, the primary concern is health insurance.  As a condition of obtaining an individual insurance policy, health insurers and managed care organizations often require access to an individual's complete medical records.  In addition, patients commonly sign a consent to release medical information to third parties as a part of their health insurance reimbursement plan. Once the insurance company has this information, there are few controls on who may have access to it.

Although proposed federal legislation to prohibit genetic discrimination in health insurance has received bi-partisan support, the states have already begun to act.  Several states have attempted to address the problem of using genetic information for discriminatory purposes in health insurance. These state laws differ in their requirements and coverage. Florida and Alabama laws prohibit discrimination by insurers based on sickle cell trait. North Carolina law prohibits denial of coverage where the applicant has the hemoglobin C or sickle cell trait. Maryland law prohibits different rates based on any genetic trait unless there is an actuarial justification.

Seven states forbid health insurers from requesting or requiring genetic tests: California; Georgia; Minnesota; New Hampshire; Ohio; Oregon; and Wisconsin. Nine states forbid health insurers from using information gained from genetic testing to deny or limit insurance coverage: Colorado; Georgia; Maryland; Minnesota; New Hampshire; New Jersey; Ohio; Oregon; and Virginia. The Texas law is limited to non-employment group policies.  The federal Health Insurance Portability and Accountability Act (HIPAA) prevents self-insured employer health plans and group health insurance from using genetic information to limit coverage. None of these well-intentioned laws is particularly effective.

The use of genetic information by health insurers exposes a fundamental problem with the U.S. health care system.  The enacted and proposed laws only prohibit discrimination against asymptomatic individuals. Thus, it would be unlawful to discriminate against a woman who had the BRCA1 breast cancer gene mutation, but if and when she developed breast cancer, it would be lawful to increase her rates to unaffordable levels or drop her from coverage altogether. But, if we enacted legislation prohibiting discrimination against any woman with such a mutation, what about the 90% or more of women whose breast cancer is from unknown causes. And, if we prohibit discrimination based on breast cancer susceptibility or diagnosis, what about all of the other conditions, such as tuberculosis or pneumonia, that are considered environmentally caused? Ultimately, the question is whether, as a society, we believe that all individuals have a right of access to a minimum level of health care.