Cases of Genetic Discrimination

National Human Genome Research Institute

National Institutes of Health
U.S. Department of Health and Human Services


Cases of Genetic Discrimination

Although no genetic-employment discrimination case has been brought before U.S. federal or state courts, in 2001 the U.S. Equal Employment Opportunity Commission (EEOC) [eeoc.gov] settled the first lawsuit alleging this type of discrimination.

EEOC filed a suit against the Burlington Northern Santa Fe (BNSF) Railroad for secretly testing its employees for a rare genetic condition (hereditary neuropathy with liability to pressure palsies - HNPP) that causes carpal tunnel syndrome as one of its many symptoms. BNSF claimed that the testing was a way of determining whether the high incidence of repetitive-stress injuries among its employees was work-related. Besides testing for HNPP, company-paid doctors also were instructed to screen for several other medical conditions such as diabetes and alcoholism. BNSF employees examined by company doctors were not told that they were being genetically tested. One employee who refused testing was threatened with possible termination.

On behalf of BNSF employees, EEOC argued that the tests were unlawful under the Americans with Disabilities Act because they were not job-related, and that any condition of employment based on such tests would be cause for illegal discrimination based on disability. The lawsuit was settled quickly, with BNSF agreeing to everything sought by EEOC.

Besides the BNSF case, the Council for Responsible Genetics [genewatch.org] claims that hundreds of genetic-discrimination cases have been documented and describes select cases in its Genetic Discrimination Position Paper. In one reported case, genetic testing indicated that a young boy had Fragile X Syndrome, an inherited form of mental retardation. The insurance company for the boy's family dropped his health coverage, claiming the syndrome was a preexisting condition. In another case, a social worker lost her job within a week of mentioning that her mother had died of Huntington's disease and that she had a 50 percent chance of developing it.

Despite claims of hundreds of genetic-discrimination incidents, an article from the January 2003 issue of the European Journal of Human Genetics reports a real need for a comprehensive investigation of these claims. The article warns that many studies rely on unverified, subjective accounts from individuals who believe employers or insurance companies have unfairly subjected them to genetic discrimination. Rarely are these subjective accounts assessed objectively to determine whether actions taken by employers and insurers were truly based on genetic factors or other legitimate concerns.

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Last Reviewed: April 2, 2012