Who's Watching Your Genes.
Brave New World? continued...
A 1998 survey by the American Management Association found that just seven of 2,133 employers surveyed acknowledged using genetic tests in the workplace. But Kathy Hudson, PhD, assistant director of the National Human Genome Research Institute (NHGRI), which helped design the survey, says the numbers may not capture the true scope of the problem.
Many of the respondents -- who were company human resource officers -- may not have understood what was meant by genetic testing. And Hudson points out that if companies are testing employees without their knowledge -- as appears to have been the case with BNSF -- they are hardly likely to acknowledge the practice in a survey.
"Even if it was happening in only a modest number of companies, it would be alarming," Hudson tells WebMD.
In spite of the recent BNSF settlement, it is unclear how much protection the ADA provides from discrimination by employers using genetic information. While experts say the law clearly protects individuals with a genetically related illness or disability in which symptoms have already occurred, it is less certain how the law applies to genetic tests that suggest a worker is only at risk for disease.
Increasingly, it is these "predictive" tests that will pose the greatest challenge to protection of workers. "The genes that are being identified and tests that are being developed are predictive," Hudson says. "They can indicate that you are at some level of increased risk of developing a disease within your lifetime. The question is how we ensure that these tests are used for an individual's benefit and not in ways that can be harmful."
Are there instances in which genetic testing at the worksite might be acceptable, even advisable?
Hudson says in rare circumstances employers might test workers for a genetic susceptibility to environmental hazards they are liable to encounter regularly in work situations. But even in such cases, the testing should not be used to single out individual employees, she says.
Protection From Ourselves
In the meantime, Hudson says state laws protecting workers vary markedly and point to the need for uniform standards. "You can see some similarities, but the state laws lack uniformity in terms of defining what is protected and in terms of what would constitute a violation," she tells WebMD.
A summary of state laws governing employer use of genetic information can be found on the NHGRI web site at
At the federal level, Congress is considering a bill that would prohibit health insurance plans and employers from discriminating on the basis of genetic information. The bill, known as the Genetic Nondiscrimination in Health Insurance and Employment Act, also would require that genetic information possessed by employers be confidentially maintained and disclosed only to the employee upon request.