On June 26, 2000, scientists announced at a White House news conference that they had completed mapping the human genome sequence, the human race's genetic blueprint. This pronouncement generated tremendous and well-deserved excitement. Genomics, the study and application of genetic information, promises to be an unparalleled tool for improving public health. Genetic testing can identify asymptomatic individuals who are at risk of becoming ill themselves or bestowing illness on their children. As a result, individuals who test positive can take prophylactic measures to slow or stop disease and can also reduce the births of progeny at high risk of compromised health. At the same time, predictive genetic testing threatens unprecedented harm in its potential to engender (and then defend on the grounds of alleged statistical probability) discriminatory treatment in employment. Consequently, scientists most involved in the Human Genome Project and politicians most supportive of it recommend strong legal protections against genetic discrimination.
Nevertheless, while the Constitution and the Privacy Act of 19749 provide some protection against the collection, use, and dissemination of genetic information on privacy grounds, effective federal regulations specifically protecting individuals from genetic discrimination in employment are almost nonexistent. Specifically, a single executive order bars federal agencies from discriminating in employment on the basis of "genetic information." Despite repeatedly voiced intentions, Congress has yet to pass legislation specifically prohibiting misuse of genetic information in the area of employment, although a five-year-old bill is once more pending. Notably, the Equal Employment Opportunity Commission ("EEOC") has had mixed initial success in applying the antidiscrimination provisions of the Americans with Disabilities Act ("ADA") to the realm of genetic discrimination. By contrast, the scope of state statutes varies by jurisdiction. About half of the jurisdictions prohibit workplace ethical acceptability of somatic gene therapy, germ-line therapy, and somatic or germ-line modification).
Anita Silvers and Michael A. Stein,
An Equality Paradign for Preventing Genetic Discrimination,
55 Vanderbilt Law Review
Available at: https://scholarship.law.vanderbilt.edu/vlr/vol55/iss5/1