The genetic revolution at work: legislative efforts to protect employees.

I. INTRODUCTION In justifying the cost of the Human Genome Project, supporters predicted fantastic benefits would result from decoding the human genome: cures for fatal diseases, effective treatments for common illnesses burdening individuals and society and a greater understanding of ourselves as human beings. Fear that genetic information will be misused to harm individuals, however, casts a shadow over this glowing portrait of the future of genomic medicine. Over the last decade, these concerns have led approximately twenty-six states to enact genetic nondiscrimination laws.1 Although no similar law has been passed by Congress, many, including Francis Collins, Director of the National Center for Human Genome Research, have repeatedly endorsed proposed federal legislation aimed at prohibiting health insurers and employers from using predictive genetic information.2 The result has been growing bipartisan support for The Genetic Nondiscrimination in Health Insurance and Employment Act introduced in February of 2001 by Representative Louise Slaughter in the House and by Senators Kennedy and Daschle in the Senate.3 Despite concerns over genetic discrimination in employment, some members of Congress hesitate to place additional regulations on employers and have questioned whether existing federal law, particularly the Americans with Disabilities Act (ADA), already provides sufficient legal remedies for workers who may be treated differently on the basis of their genetic makeup. Hearings convened by Senate and House committees have focused on this issue4 and may lead committee members to conclude that genetic discrimination in employment, although not explicitly mentioned in the statute, is nevertheless already prohibited by the ADA. That would not, however, preclude committee members from concluding that the ADA does not go far enough in protecting American workers. That being the case, Congress could decide to strengthen the rights of workers in one of several ways: by amending the ADA, by enacting a separate law addressing genetic discrimination or by enacting a comprehensive law that protects genetic privacy as well as prohibiting genetic discrimination. In the meantime, employees seeking relief from genetic discrimination in the workplace can argue to the Equal Employment Opportunity Commission (EEOC), the agency authorized to enforce the ADA, or to a court, that they are protected by the ADA, or they can look to their own state laws for alternative protections. Although no court has had the opportunity to rule on the applicability of the ADA to a genetic discrimination claim, the EEOC has taken the position that the ADA does encompass such claims. This view was initially articulated by the EEOC in an enforcement guidance on the definition of disability in the statute,5 reiterated in a subsequent guidance on disability related inquiries and medical examinations under the ADA,6 and relied upon in its recent action against Burlington North Santa Fe Railway.7 In the Burlington case, the agency had received complaints from Railway employees that the company had been secretly testing their DNA. Acting on the assumption that unauthorized testing and use of genetic test results violated provisions of the ADA, the EEOC immediately sought an injunction against any further genetic testing by the company. However, the Railway Company agreed to cease its genetic testing program before it became necessary for the court to rule on the applicability of the ADA to the circumstances surrounding the Railway workers complaints.8 Presumably, this was a satisfactory outcome for the employees involved. Nevertheless, it leaves those of us curious as to how the court would have dealt with the agency's interpretation of the ADA dissatisfied, because we can only speculate as to what the court's reasoning would have been and who might have ultimately prevailed. Oddly enough, had the Burlington Railway employees' complaints been brought under a state genetic nondiscrimination law, they would not necessarily have been on stronger legal ground. …