The Council for Responsible Genetics': Position Paper on Genetic Discrimination

Holtzman Neil A. 1989. Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era. Baltimore: The Johns Hopkins University Press.

Hubbard Ruth . 1990. The Politics of Women's Biology. New Brunswick: Rutgers University Press.

Nelkin Dorothy and Tancredi Laurence . 1989. Dangerous Diagnostics: The Social Power of Biological Information. New York Basic Books.

Wertz Dorothy C. and Fletcher John C. , editors. 1989. Ethics and Human Genetics: A Cross Cultural Perspective. New York: Springer-Verlag.

geneWATCH, the Bulletin of the Council for Responsible Genetics, for critical information about new biotechnologies and their social, political and ethical impacts. Published bi-monthly by the Council, 186 South St., 4th Floor, Boston, MA 02111.

This position paper is intended to accompany the Council for Responsible Genetics' Position Paper on the Human Genome Initiative, which describes the Initiative in greater detail, evaluates its goal and methods, and its implications for expanding the number and range of predictive genetic tests.

A survey of corporate views about AIDS was published in the January 1988 issue of Fortune magazine. It revealed that 39 percent of the Chief Executive Officers surveyed would not hire individuals who were HIV positive, while 38 percent were not sure whether they would hire such individuals. Reported in Rothstein Mark A. , Medical Screening and the Employee Health Cost Crises, BNA Books (1989), p. 86. Job discrimination against recovered cancer patients is documented in Feldman , “Wellness and Work,” in Psychosocial Stress and Cancer, pp. 173–200 ( Cooper C. , ed. 1984).

A brief history of employment discrimination on the basis of genetic traits is presented in “Genetic Screening of Prospective Parents and of Workers: Some Scientific and Social Issues” by Hubbard Ruth and Henifin Mary Sue , in Biomedical Ethics Review, edited by Humber James and Almeder Robert T. , Humana Press (1984), pp. 99–111.

Individuals who have one sickle cell gene (a condition called sickle cell trait) are free of symptoms and do not know that they have the gene, unless they have been tested for it. However, those who have two sickle cell genes have sickle cell anemia and may experience severe symptoms. Approximately one in 500 African American babies is born with sickle cell anemia, and about one in 10 carries the sickle cell gene. Although no scientific evidence exists to show that African Americans with sickle cell trait experience increased morbidity or mortality, their identification through screening programs in the 1970s led to job and insurance discrimination against them. For example, Charles Reinhart, Director of the DuPont Laboratory for Toxicology, reported in 1978 that DuPont gave pre-employment blood tests to African Americans to screen for sickle cell trait. He stated that at the Chambers Works plant, in Deepwater, New Jersey, individuals with sickle cell trait who had hemoglobin levels of less than 14 grams per 100 milliliters of blood (normal levels are usually given as 13 to 16 g per 100 mL) were restricted from work that involved handling nitro and amino compounds. Reinhart Charles , “Chemical Hypersusceptibility,” 20 Journal of Occupational Medicine (1978), pp. 319–322.

Specifically, the Rehabilitation Act of 1973, as amended, protects individuals with disabilities who are otherwise qualified, from employment discrimination at the hands of the federal government, federal contractors or businesses receiving federal funds. 29 U.S.C. Secs. 701–795 (Supp. 1989).

The Americans with Disabilities Act, (Senate Bill No. 933, House Bill No. 2273) was passed by the Senate on September 7, 1989, the House on May 22, 1990 and signed into law by President Bush on July 26, 1990. The Act would bar discrimination on the basis of disability in employment, public services and public accommodations. One of the provisions that was targeted for deletion, but escaped amendment during 1989, would prohibit employers from using pre-employment physicals or inquiring about an applicant's disability status.

For example, in School Board of Nassau Co. v. Arline, 480 U.S. 273 (1987), the Supreme Court declined to decide whether the Rehabilitation Act would protect a person from employment discrimination who has no symptoms but whose medical tests indicate that a disease might develop in the future. 480 U.S. 282, n.7. In Arline, an elementary school teacher was fired after a relapse of tuberculosis. The court ruled that the Rehabilitation Act covers those who are able to work, but “are regarded as impaired and who, as a result, are substantially limited in a major life activity.”

In the early 1900s women had trouble getting insurance due to misconceptions about increased female mortality due to child birth hazards. See Note, Challenges to Sex-Based Mortality Tables in Insurance and Pensions, 6 Women's Rights Law Reporter 59 (1979–1980) and Heen , Sex Discrimination in Pensions and Retirement Annuity Plans After Arizona Governing Committee v. Norris, 8 Women's Rights Law Reporter 155 (1985), p. 161. African Americans also experienced insurance discrimination. See James M. , The Metropolitan Life: A Study in Business Growth 338 (1944); Myrdal G. , An American Dilemma: The Negro Problem and Modern Democracy 316–317, 955, 1262–63 (1944), and Stuart M.S. , An Economic Detour: A History of Insurance in the Lives of American Negroes (1940).

The utility of such laws is explored by Holtzman Neil A. in Proceed with Caution: Predicting Genetic Risks in the Recombinant DNA Era, Johns Hopkins University Press (1989), pp. 199–200.

The invidious nature of discrimination is the same whether an individual has a disability or is perceived as having one. Both types of discrimination are demeaning in that they stereotype the individual and deny his or her abilities.

According to a recent news report, the FBI is laying the groundwork for a computer information network that would contain genetic information on all violent offenders who have been incarcerated. The network would permit prosecutors to search DNA data banks to match evidence from rapes or murders against a list of DNA taken from convicted offenders. At least four states, California, Colorado, Nevada and Virginia, have drafted laws that would require that blood be taken from prisoners convicted of violent crimes so that their genetic profiles can be entered into such a DNA data bank. Sherman Rorie , “On the Horizon: A DNA Data Bank,” National Law Journal, Dec 18, 1989, p. 25. Arkansas, Georgia, Louisiana, Maryland, Arizona, Florida, Michigan and Massachusetts also enacted or introduced legislation during 1989 concerning DNA identification systems. See Table 1, DNA Identification Bills Before State Legislators, geneWATCH, vol. 6, no. 1. See also the testimony of Professor Philip Bereano before the Subcommittee on Civil and Constitutional Rights, U.S. Senate Judiciary Committee, March 1989.