Sponsored by the U.S. Department of Energy Human Genome Program
Human Genome News Archive Edition
Vol.12, Nos.1-2 February 2002
In the News
Special Meeting Report
Web, Publications, Resources
Meeting Calendars & Acronyms
Analyzing Genetic Discrimination in the Workplace
Following are remarks of EEOC Commissioner Paul Miller at the EINSHAC International Working Conversation on Enviro/Genetics Disputes and Issues in July 2001. They have been adapted for use in HGN.
We have entered an age in which mankind wields increasing power to alter and dictate the course of nature. The mysteries of our genetic code have been unveiled, providing remarkable new insights into our unique human characteristics. Indeed, the information age has taken hold and the genetic revolution is upon us, and, with apologies to Aldous Huxley, we stand at the precipice of a brave new world.
Genetic discrimination is an issue that interests me greatly, for both professional and personal reasons. In my work at the Equal Employment Opportunity Commission (EEOC), the federal agency charged with enforcing workplace antidiscrimination laws, I am concerned about all forms of workplace discrimination, and I struggle with ways to decrease its incidence andto fight for those who have been victimized.
The policy question is, Should employers have access to genetic information? Moreover, should they know my genetic information even if I chose not to know it? Should they be able to participate in or influence these most personal questions and issues? What protections do I have to ensure that my genetic information will not be misused?
Exploding Genetic Technology
By 2010, scientists predict, the modest sum of $100 will buy a test that effectively identifies genetic markers for a myriad of conditions and diseases. Think about whether you want your employer to know your genetic predispositions and your genetic potential or lack thereof.
Genetic Discrimination in the Workplace
Studies show both empirical and anecdotal evidence of genetic discrimination in the workplace. Moreover, the fear of discrimination may in turn make people reluctant to take advantage of the growing array of genetic tests that can identify vulnerability to specific diseases. Legal protections are essential so that scientific breakthroughs are realized, privacy is preserved, and the workplace remains free from discrimination. Moreover, law can provide a uniform standard of conduct regarding the use of genetic information in the workplace.
It is important to note as we begin our discussion that the entire body of American workplace antidiscrimination law is built upon the premise that applicants and employees must be selected based on their ability to do the job and not on myths, fears, and stereotypes regarding race, ethnicity, gender, age, religion, or disability. As it becomes possible to learn more about genetic predispositions, society faces the questions of whether employers should be able to consider such information in making employment decisions and, if not, how the law should protect workers from its misuse.
Civil Rights Model
Clearly, the ADA covers people who have a manifested genetically related illness or disability that impairs a major life activity as well as those who have a record of a genetically related disability (e.g., someone who has recovered from cancer). The more challenging question is whether the ADA prohibits discrimination based on a diagnosed but asymptomatic genetic condition that does not substantially limit a major life activity.
Bragdon v. Abbott
In its opinion, the court meticulously described the cellular impact of HIV infection on blood and other body tissues. Looking beyond any visible symptoms or easily detectable manifestations of the disease, the court found a physical impairment based on the cellular and molecular changes that take place in the body due to the infection. Similar reasoning might support the argument that the ADA covers individuals with asymptomatic genetic predispositions under the actual prong of the ADAs definition.
Ominously, however, in his dissent Chief Justice Rehnquist, joined by Justices Scalia and Thomas, seemed to reject the notion that the ADA covers genetic discrimination.
Pending Genetic-Discrimination Legislation
Genetic Executive Order
Is Genetic Testing Ever Appropriate?
The ADA permits disability-related inquiries and medical examinations of employees when they are job related and consistent with business necessity. The historical antecedent for this standard is that employers often used information about the physical or mental condition of employees to exclude or otherwise discriminate against those with disabilities, despite their ability to do the job. The job-related standard provides the employer with the opportunity to demonstrate that the existence of a genetic predisposition is a relevant and appropriate subject for inquiry.
Pending genetic-discrimination legislation analyzes the issue differently. Rather than containing a job-related test, the bill establishes a much more restrictive standard. An employer would not be permitted to request or collect genetic information except where used to monitor the biological effects of toxic substances in the workplace and then only with knowing and voluntary consent. The genetic testing must conform with regulations promulgated pursuant to OSHA, the Occupational Safety and Health Act.1
The facts of the case are simple. The EEOC alleged that the Burlington Northern Sante Fe (BNSF) Railroad subjected its employees to surreptitious testing for a genetic marker linked to carpal tunnel syndrome. BNSF was attempting to address its high incidence of repetitive stress injuriesand the resulting payment of compensationamong its employees. Moreover, at least one employee was threatened with discipline and possible termination for refusing to take the genetic test.
The genetic-testing program was revealed when one of the workers diagnosed with carpal tunnel syndrome went to the company doctor with his wife for a mandatory exam. His wife, who is a nurse and the Erin Brockovich of the story, became suspicious when the doctor drew seven vials of blood during the examination of the workers wrist.
Because the possibility of termination was imminent, the EEOC acted swiftly and sought an emergency injunction in federal court in Iowa. In the motion for the injunction, the EEOC alleged that the tests themselves were unlawful under the ADA because they were not job related and consistent with any business necessity. To condition any employment action on the results of such tests would be to engage in unlawful discrimination based on disability. Just 2 months after the suit was filed, the EEOC and BNSF reached a settlement in which the EEOC achieved everything it sought.
What was particularly reassuring to me about the Burlington Northern case was that no one, not the business community, the employer groups, the scientists, the press, the politicians, nor even the talking heads on MSNBC thought that surreptitious genetic testing of employees and adverse actions against those who have the wrong genetic marker should be allowed.
Although I practice law here in the United States, these issues are equally relevant throughout the world. The genetic revolution in science and medicine does not end at the U.S. border, and its implications for privacy and potential abuse are as likely to arise wherever the technology exists, regardless of the legal or cultural environment or tradition.
I think it is important to note that genetic mutations are not themselves all badeven those that cause a disorder. A genetic mutation created my achondroplasia, but I do not think having that gene is bad or something that needs to be cured. Most people with nonlife-threatening genetic disabilities, mental retardation, deafness, and so on feel this same way. Society imparts value to ones mutation and, until now, has imparted a negative value on mutations that are expressed, those that one can see or be aware of. What about the hidden markers that we now will learn each of us harbors? Will we be willing to allow employers to assign a negative value to such genetic markers even if they have no effect on ones ability to do a job? I hope not. I hope we call that illegal discrimination.
Paul Miller, EEOC, www.eeoc.gov
1The Supreme Court decision in International Union v. Johnson Controls, 499 U.S. 187 (1991), also may be instructive on this issue. In Johnson Controls, the court held that a chemical companys policy barring opportunities to women who had the ability to bear children due to concerns over harmful lead exposure violated Title VII as gender discrimination. The beneficence of the employers purpose did not remedy the facially discriminatory practice. BackReturn to Top of Page
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The Human Genome Project (HGP) was an international 13-year effort, 1990 to 2003. Primary goals were to discover the complete set of human genes and make them accessible for further biological study, and determine the complete sequence of DNA bases in the human genome. See Timeline for more HGP history.
Published from 1989 until 2002, this newsletter facilitated HGP communication, helped prevent duplication of research effort, and informed persons interested in genome research.