American Journal of Law & Medicine

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


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 issue (4) 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. (9) There are no reported cases on any of the employment statutes enacted in response to the proliferation of genetic testing anticipated in the wake of the Human Genome Project, therefore, this would have been a case of first impression in any state court and any rulings of law affirmed on appeal would have established precedent. What sets states apart, however, is the timing and scope of the laws they have enacted. Some states acted early on in the debate over fair uses of genetic information and put economic protections quickly into place. In 1995, thirteen states had bills pending on uses of genetic information in insurance and/or employment and five became law that year. (10) The legislature in Massachusetts began studying issues of genetic privacy in 1995, (11) but it took five years for a bill relative to insurance, employment, genetic testing and genetic privacy to be introduced and enacted. (12) Employees in Massachusetts may very well wonder if their law was worth the wait. In this article, I will try to address that question by exploring what might have happened in Massachusetts if the actions complained of by the employees of Burlington Railway had taken place after the Massachusetts law went into effect. As no court has yet had occasion to interpret any of the provisions of the Massachusetts statute, my analysis is, of course, speculative. Nevertheless, examining the statutory language in relation to specific facts helps to illuminate the achievements and shortcomings of this law from an employee's perspective. Finally, I have drawn on this analysis to formulate recommendations for future legislation.


The primary goal of the Massachusetts law enacted in July 2000 is "to protect the results of genetic tests as private information." (13) To achieve this goal, the statute generally requires informed consent before genetic tests are performed (14) and before genetic information can be disclosed to third parties. (15) The Act amends chapters of the Massachusetts laws governing employment and insurance to prohibit employers and insurers from requiring genetic tests as a condition of employment (or insurance) and to prohibit employees and insurers from discriminating on the basis of genetic test results. (16)

For the sections of the Act that regulate employment, the terms "genetic information" and "genetic test" have been given broad meanings. For employment purposes "genetic information" means "any written, recorded individually identifiable result of a genetic test as defined by this section or explanation of such a result or family history pertaining to the presence, absence, variation, alteration, or modification of a human gene or genes." (17) How lawmakers envisioned that family history information could be revealed in employment, much less documented in any written form, is not entirely clear. Unless an employer has access to an employee's medical records, the most likely source of information about an employee's family members would be statements made by the employee in the normal course of conversation in the workplace or in relation to requests for family leave time. Even if family information were made known to an employer, it would seem to be of limited value for drawing any reliable conclusions about the employee's genetic makeup and future health. Nevertheless, it is reasonable to have included family history in the definition of genetic information when we consider how a rare monogenetic disease, such as Huntington disease (HD), is inherited. …

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