Legislative Briefing Kit on Genetic Discrimination
(Access this report for a more detailed discussion of the issue.)
Myth: Genetic testing is an accurate way to predict disease.
Fact: While some genetic tests can accurately predict that an individual will develop a certain disease or condition (for example, Huntington’s Disease or sickle cell anemia), even those tests often do not indicate when the individual will develop symptoms or how severe the symptoms will be.
Many genetic tests now commercially available, including tests for such complex conditions as breast cancer, cannot predict whether a person will actually develop the disease, but only if they have a genetic predisposition and a greater likelihood of developing cancer. Many people who test positive for genetic mutations associated with certain conditions will never develop those conditions. Moreover, while individuals with genetic mutations associated with certain diseases like cancer may be at higher risk, there are many factors which determine whether someone will actually develop the disease. For example, most women who develop breast cancer (85 to 90%) do not have an inherited genetic susceptibility to the disease.
Most health care providers do not have training in genetics, and many who order genetic tests may not know how to interpret the results. There is no requirement for genetic counseling in commercial or many clinical settings, so individuals and their doctors often do not understand what the results of a genetic test really mean for the individual or family members.
Myth: Genetic tests are reliable and safe.
Fact: Currently the U.S. Food and Drug Administration (FDA) has declined to regulate genetic tests, despite the fact that many are commercially available and aggressively marketed by biotech firms. The absence of regulation means that there is no government oversight or quality control, and the accuracy and reliability of the tests are unproven.
While taking blood or tissue sample for the purpose of genetic testing may cause minimal risk of physical harm, the results of genetic tests often create enormous psychological problems for individuals tested and their families. Information gathered from genetic tests is not just about individuals – it has implications for all of one’s blood relatives as well. Sometimes genetic tests have implications for whole communities, since some genetic conditions are associated (sometimes inappropriately) with certain racial or ethnic groups. For example, sickle cell anemia is associated with African-Americans, and predisposition for breast cancer has been associated by some with Ashkenazi Jews, even though it is not clear that they as a group are at greater risk.
Myth: Genetic testing is not really a serious workplace issue.
Fact: Genetic testing in the workplace is on the rise. In 1982 a federal government survey found that 1.6% of companies who responded were using genetic testing for employment purposes. 1 In a similar survey conducted by the American Management Association in 1997, 6-10% of employers were found to be conducting genetic testing. 2
Moreover, there have been many documented cases of genetic discrimination. 3 In a survey of nearly 1,000 individuals who were at risk for genetic conditions, over 22% reported that they had experienced some form of discrimination based on their risk status. 4 The U.S. Department of Labor has found genetic information to be a very serious workplace issue. 5
Myth: Certain work environments may hasten the onset of genetically based diseases, and genetic testing can protect employees who are “at risk”.
Fact: Currently no one knows whether some work environments hasten the onset of genetic disease. According to the American Medical Association, “there is insufficient evidence to justify the use of any existing test for genetic susceptibility as a basis for employment decisions.” 6 There is no empirical data showing that “the genetic abnormality results in an unusually elevated susceptibility to occupational injury”. 7
Myth: Federal laws like the Americans with Disabilities Act (ADA) protect employees from genetic discrimination in the workplace.
Fact: The extent of federal protection against genetic discrimination is unclear, and limited at best. 8 The federal appeals courts are divided on the scope of protection of the ADA, particularly for employees who have not yet manifested symptoms of illness. 9 In any event, the ADA addresses workplace discrimination, but not privacy. There is currently no federal law which prohibits an employer from requesting genetic information or testing employees, and no law protecting the privacy of genetic information. 10
Myth: State employment discrimination laws protect workers against genetic discrimination.
Fact: Currently only 12 states have enacted laws that protect employees from genetic discrimination in the workplace (including California, Connecticut, Illinois, Iowa, New Hampshire, New Jersey, New York, North Carolina, Oregon, Rhode Island, Texas and Wisconsin); a handful of other states have legislation pending.
1 “The Role of Genetic Testing in the Prevention of Occupational Disease”. Office of Technology Assessment, April 1983.
2 American Management Association.
3 P. Billings, et al. “Discrimination as a Consequence of Genetic Testing,” American Journal of Human Genetics. 50 (1992): 476-482.
4 “Individual, Family, and Social Dimensions of Genetic Discrimination: A Case Study Analysis”. Lisa N. Geller et al., Science and Engineering Ethics, Volume 2, Issue 1, 1996.
5 Genetic Information and the Workplace. U.S. Department of Labor Report, January 20, 1997.
6 “Use of Genetic Testing By Employers”, Council on Ethical and Judicial Affairs, Journal of the American Medical Association. October 2, 1991, Vol. 266, No. 13.
8 42 U.S.C.A. Sec. 12111 et. seq.
9 There is a case, Bragdon v. Abbot, pending in the U.S. Supreme Court, which raises the issue of whether the ADA covers such conditions as asymptomatic HIV infection; the Court’s decision in that case may have broader implications regarding the applicability of the ADA to asymptomatic genetic conditions.
10 Recently the Ninth Circuit ruled that Lawrence Berkeley Laboratory may have violated its employees’ constitution right to privacy by subjecting workers to genetic testing without their knowledge or consent, and remanded the case to the trial court. See Norman-Bloodsaw et al. v. Lawrence Berkeley Laboratory et al., No. 96-16526, 9th Cir., Feb 3, 1998. This is the first U. S Appeals Court decision on genetic privacy in the workplace.
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