What is genetic discrimination?

Genetic discrimination describes the differential treatment of individuals or their relatives based on their actual or presumed genetic differences as distinguished from discrimination based on having symptoms of a genetic-based disease (Geller, et al, 1996). Genetic discrimination is aimed at people who appear healthy or whose symptoms are so mild that their functioning and health are not affected. Such individuals may include people who carry the gene for fragile X, the most common inherited cause of mental retardation. Twenty percent of people with this gene will never display any form of mental retardation. Yet, because they carry the gene for fragile X, they could be treated as though they had mental retardation even though they do not (Boyle, 1995).

Why is concern about genetic discrimination increasing?

The Human Genome Project, a collaboration of scientists worldwide, is conducting research to find the location of the 100,000 or so human genes by the year 2005. Understanding the complete set of genes, known as the human genome, will lead to precise new approaches to the diagnosis, treatment and prevention of disease. Errors in our genes are responsible for an estimated 3000 to 4000 clearly hereditary diseases and conditions. They play a part in cancer, heart disease, diabetes and many other common conditions, such as mental retardation. Within the next five to ten years we may be able to discover almost all of the diseases we are at risk of inheriting.

Genetic testing can be harmful if the information is used to deny jobs or insurance or if it leads to other forms of discrimination. According to Francis S. Collins, Director, National Center for Human Genome Research (1995), "all of us carry probably four or five really fouled-up genes and another couple of dozen that are not so great and place us at risk for something" (p. 16). However, although everyone has a few defective genes, not everyone will be affected. Multiple factors within the environment have a significant impact on a person's health. These factors, either alone or combined with a disease-causing gene, can increase or decrease an individual's risk of developing a disease (Nelson-Anderson & Waters, 1995).

Where is genetic discrimination happening?

A recent study which questioned people with defective genes that could lead to a disease, but who had no symptoms, found that genetic discrimination occurred in many settings (Geller, et al, 1996). As a result, people who fear potential genetic discrimination may be discouraged from obtaining genetic information that could bring health benefits to them and their families.

One of the most common forms of discrimination is denial of health insurance based on a person's genes. Insurance companies gather and use medical information to predict a person's risk of illness and death. They use this "risk" information to determine which individuals and groups they will insure and at what price. That information plays a critical role for people in determining access to health care.

Employment is another area with reported cases of discrimination. Many individuals believe they were not hired or were fired because they were at-risk for genetic conditions. In other cases, individuals who were employed were reluctant to change jobs because they feared losing health insurance coverage (Geller, et al, 1996). Having a defective gene could be considered a pre-existing condition by insurance companies who, on that basis, may deny coverage. Recently passed federal legislation places limitations on the exclusion period for pre-existing conditions when people change jobs (The Health Insurance Portability and Accountability Act of 1996).

Discrimination has also occurred when medical professionals counseled individuals about child bearing by urging prenatal diagnostic testing or telling them they should not have children. Similarly, some adoption agencies have unfairly treated prospective parents with a genetic condition by refusing adoption or assuming they should adopt only children at risk of inheriting a disability (Geller, et al, 1996).

Doesn't the ADA protect people against genetic discrimination?

The Americans with Disabilities Act (ADA) offers protection from discrimination to individuals currently affected by a genetic condition or disease. It also applies to individuals who are regarded as having a disability. The Equal Employment Opportunities Commission, which oversees enforcement of nondiscrimination in employment, has ruled that ADA applies specifically to individuals who are subjected to discrimination on the basis of genetic information relating to illness, disease, condition or other disorders (EEOC, 1995). This interpretation extends coverage to people who have genes making them predisposed to a disease-causingdisability or who have genes for a late-onset disorder. However,it may not protect carriers of genetic disorders who do not yet manifest symptoms of a disease (the "unaffected carrier"). They may be discriminated against based on concerns about health costs of future affected dependents.

The Americans with Disabilities Act does not cover the insurance industry. Insurance companies may deny health, life, disability and other forms of insurance to people with defective genes if there is a sound basis for determining risks consistent with state law. Health maintenance organizations can also refuse to cover an individual with a genetic diagnosis even if the individual has no symptoms of the genetic disorder, provided there is a sound basis for the decision based on actual risk experience (Alper and Natowicz, 1993).

What are the implications of genetic information for family members?

When people learn that they have a gene that places them at increased risk for certain diseases, they face the dilemma of whether or not to tell other family members about their potential susceptibility to disease. This information is directly relevant to their biological relatives, for other family members may also have the gene and be at increased risk. It also has implications for family members being at risk of genetic discrimination, since genetic information about an individual is also information about that person's family.

Genetic information may profoundly affect people's decisions about having children. There is also evidence that some individuals who have defective genes are stigmatized, suffering a loss of social and economic opportunities (NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, 1993).

What steps are being taken to eliminate genetic discrimination?

In addition to federal law and regulations, several states have developed and adopted legislation banning discrimination in health insurance and employment. Currently eleven states have laws prohibiting health insurers from denying health care coverage because of a genetic condition. Seven states prohibit employers from requiring genetic tests or using genetic health predictions in employment decisions. Seven other states have bills pending to protect individuals from discriminatory use of genetic information in employment practices or for insurance purposes (Council for Responsible Genetics, 1996).

As noted earlier, the Federal Health Insurance Portability and Accountability Act of 1996 offers protections against discrimination in health insurance by limiting pre-existing condition exclusions. It also prohibits discrimination against individuals based on health status, including their genetic information.

For more information contact:

National Center for Human Genome Research
Office of Communications, Bldg. 31, Rm. B1C35
9000 Rockville Pike
Bethesda, MD 20892
(301) 402-0911, FAX (301) 402-4570
electronic access: wsd@cu.nih.gov
Contact: Leslie Fink or Sharon Durham
http://www.nchgr.nih.gov

Council for Responsible Genetics (CRG)
5 Upland Rd., Su. 3
Cambridge, Mass. 02140
(617)868-0870
http://www.essential.org/crg

The Genome Action Coalition
317 Massachusetts Ave., N.E., Su. 100
Washington, D.C. 20002
(202) 546-4732
Contact: Lyle Dennis

The HuGEM Project: Issues in Genetic Privacy and Discrimination, Georgetown University
3307 M St. NW, Su. 401
Washington, DC 20007
(202) 687-8635

References

Alper, J.S. & Natowicz, M.R. (1993). Genetic discrimination and the public entities and public accommodations titles of the Americans with Disabilities Act. Am. J. Hum. Genet., 53, 26-32.

Boyle, P.J. (1995). Shaping priorities in genetic medicine. Hastings Center Report, 25, S2-S8.

Collins, F.S. (1995). Evolution of a vision: Genome project origins, present and future challenges, and far-reaching benefits. Human Genome News, 7, 3 and 16.

Council for Responsible Genetics. (1996). Laws regarding genetic discrimination. Cambridge, MA.

Equal Employment Opportunity Commission (EEOC). (March 14, 1995). Directives Transmittal. Executive Summary: Compliance Manual Section 902, Definition of the Term Disability.

Geller, L.N., Alper, J.S., Billings, P.R., Barash, C.I., Beckwith, J. & Natowicz, M.R. (1996). Individual, family, and societal dimensions of genetic discrimination: A case study analysis. Science and Engineering Ethics, 2, 71-88.

Nelson-Anderson, D.L. & Waters, C.V. (1995). Genetic connections: A guide to documenting your individual and family health history. Missouri: Sonters Publishing.

NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research. (1993). Genetic information and health insurance. (Report of the Task Force on Genetic Information and Insurance). U.S. Department of Health and Human Services: National Center for Human Genome Research.

The Health Insurance Portability and Accountability Act of 1996, Pub.L. No. 104-191, Title 1, Sec. 101 and 102, 104th Cong. (1996).

This Q&A was funded, in part, by the U. S. Department of Energy ELSI Program under Grant No. DE-FG03-96ER62162 and produced by The Arc's Human Genome Education Project, Sharon Davis, Ph.D., Principal Investigator and Leigh Ann Reynolds, Project Associate. Support from DOE does not constitute an endorsement of the views expressed in this publication.

#101-51

Revised December 1996

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