Preserving Privacy, Preventing Discrimination Becomes the Province of Genetics Experts
Authors: M J Friedrich
Journal: JAMA (2002)

ROCHESTER, NY—More than a dozen middle-aged Burlington Northern and Sante Fe railroad workers filing disability claims related to carpal tunnel syndrome were subjected to genetic tests without their knowledge or consent. Testing was done to screen for a genetic marker linked to carpal tunnel syndrome. While no specific gene for this disorder has been discovered, the tests were searching for any gene that might hint at an extremely rare disease that may include manifestations of carpal tunnel syndrome. The company surreptitiously performed the tests to avoid paying disability claims for any worker carrying the obscure gene. The workers sued and the case was settled earlier this year. As a result of the settlement, however, the issues regarding whether the company was doing something illegal were not resolved, said Joanne Hustead, JD, assistant research professor, Georgetown University, Washington, who spoke at the Inaugural Symposium on Genetic Privacy and Discrimination held here in June. While examples like this one of genetic discrimination in the workplace are not common, threats to genetic privacy and the potential for discrimination based on genetic data are likely to increase as researchers glean more information from the Human Genome Project. Increasingly, the role genetic factors play in common diseases is being recognized. As symposium chair Ira Shoulson, MD, professor of neurology, pharmacology, and medicine at the University of Rochester School of Medicine, pointed out, the integration of genetic information into medicine promises over time to transform medical practice, shifting the emphasis from symptomatic care to preventive care, from treatment of illness to treatment of risk. All people have genetic flaws. Experts estimate that, on average, each person carries about six genetic burdens. But bearing an altered gene doesn’t necessarily mean an individual will become ill. Even when a gene is highly predictive of disease, as is the case with Huntingdon disease (HD), the disorder may not develop for decades. The gene carrier could become ill or disabled for another reason long before the onset of the genetic illness. Should employers or health insurance companies be able to use predictive information to deny someone a job or health insurance? For many of those who study the issues, the answer is “no.” They say that using the results from genetic tests and services to influence a healthy individual’s employment or health insurance coverage is genetic discrimination. In employment, such discrimination would include decisions about hiring, firing, benefits, and job opportunities and advancement. In health insurance, it would include denying or canceling coverage, refusing to renew a policy, and changing the terms, premiums, or conditions of coverage. Unlike being a smoker, for example, a risk behavior an individual chooses to engage in and which a health insurer might consider when adjusting a premium, carrying a genetic risk factor is not a personal decision. Although it may be difficult to quit smoking, many smokers successfully do so. But as Shoulson notes, one is unfortunately stuck for life with one’s bad genes—at least for now—and denying a person a job or health insurance based on an inherited genetic profile can be considered unfair. Protecting the privacy of genetic information should help ensure that people retain the right to control access to their information, even if they divulge it in specific instances, and this in turn should help prevent the misuse of genetic data. Shoulson and others convened the symposium because of the increase in genetics-related ethical, legal, and social issues that parallels the progress being made in genetics research. Genetics experts working in medicine, law, and sociology joined policy makers and health insurance and pharmaceutical industry leaders to address concerns about the privacy of genetic information in the health care, employment, and research settings and to assess public policy positions that seek to secure genetic privacy and prevent geneticsrelated discrimination.