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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
We constantly are learning of the discovery of new genes. As the science of genetics explodes and the technology becomes more accessible, the issue of how society protects its workers against the misuse of genetic information will become more important and legal and policy development in the area, more compelling. My concern, and a concern shared by many, is that if employers are permitted to consider genetic information in making personnel decisions, people may be unfairly barred or removed from employment for reasons that are wholly unrelated to their ability to perform their jobs.
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
For purposes of this talk, I am calling it genetic discrimination when an employer takes an adverse employment action based on an applicants or employees asymptomatic genetic predisposition to or probability of having a disease or medical condition. The potential for genetic discrimination is real and no longer just the stuff of science fiction. Employers can learn an employees genetic information through genetic testing, company medical exams, family history, or medical records. In addition, employers who self-insure have unique access to medical information. I believe that the notion of private genetic information is a quaint misnomer.
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
There are several different approaches in the United States for analyzing genetic discrimination. The Americans with Disabilities Act, the ADA, prohibits discrimination against a qualified individual with a disability. A person with a disability is defined by the law as one who either has a physical or mental impairment that substantially limits a major life activity, has a record of such an impairment, or is regarded as having such an impairment. In short, an individual can be covered by the ADA under any of these three different prongs of the law. It is important to note that the ADA does not explicitly address or define genetic discrimination.
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.
In 1995, the EEOC adopted the view that the ADA prohibits discrimination against workers based on their genetic makeup. Though lacking the force of law, the EEOCs policy explicitly states that discrimination on the basis of genetic information is covered under the third prong of the statutory definition of disability, which covers people who are regarded as having impairments. This part of the statute is designed to protect against prejudices and misconceptions about disability and reflects a recognition by the U.S. Congress that the reactions of others to a perceived impairment can be just as disabling as limitations caused by an actual impairment. In my opinion, genetic-predisposition discrimination is exactly the kind of situation Congress intended to be covered by the regarded as prong.
Bragdon v. Abbott
In the first U.S. Supreme Court decision interpreting the ADA, Bragdon v. Abbott, the Supreme Court crafted a decision that supports an alternative model for analyzing genetic-predisposition discrimination. In Bragdon, the Supreme Court held that a person with asymptomatic HIV is a covered individual with a disability under the ADA. The court found that HIV infection is an actual physical impairment that substantially limits the major life activity of reproduction, even when the individual is not exhibiting any visible symptoms of illness.
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
Notwithstanding these strong arguments for ADA coverage, some are concerned that courts will find that the ADA does not cover genetic-predisposition discrimination. Others believe that genetic discrimination is so different from traditional disability discrimination that the ADA does not provide a satisfactory framework. Thus, legislation introduced in the U.S. Congress by Senate Majority Leader Tom Daschle and Senator Edward Kennedy specifically prohibits discrimination by private-sector employers on the basis of genetic information. Moreover, just last week President Bush spoke in support of genetic-discrimination legislation.
Genetic Executive Order
The Daschle-Kennedy bill is based on a presidential executive order signed by Bill Clinton that prohibits the federal government from considering genetic information in hiring, promoting, discharging, and all other employment decisions. As an executive order and not legislation, it applies only to employees, former employees, and applicants to the federal government.
Is Genetic Testing Ever Appropriate?
As it appears that genetic discrimination will be prohibited by either the ADA or specific legislation, the question arises whether genetic testing is ever appropriate in the employment context. Again, the ADA and the pending genetic legislation provide two different frameworks.
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
It is important to note that no genetic-employment discrimination case has ever been decided, in either U.S. federal or state court. However, recently the EEOC settled the first lawsuit alleging such discrimination.
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.
In closing, I think that while genetics may be good science and suitable for determining paternity or finding out who the bad guy is in a criminal case, genetic information should not be used to exclude qualified workers from the workplace. Genotype is no substitute for qualifications, and no employer should ever review your genetic records along with your resumé.
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. Back
The electronic form of the newsletter may be cited in the following style:
Human Genome Program, U.S. Department of Energy, Human Genome News (v12n1-2).
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.