Good morning Mr. Chairman and Members of the Committee. I am Paul Steven Miller, Commissioner of the U.S. Equal Employment Opportunity Commission (EEOC or Commission). It is an honor to discuss the issue of protecting workers from discrimination on the basis of genetic information. We at the Commission appreciate the opportunity to provide our insights into your discussions.
The surge in genetic research and technology, fueled in large part by the Human Genome Project, has resulted in the continuing expansion of the range of genetic tests and other genetic information available to employers that, if misused, can lead to discrimination. Genetic information can provide presymptomatic medical information about an individual, including information about an individual's increased risk of future disease, disability or early death. Although accessing genetic information provides great benefits in terms of enabling early detection and treatment of illness and disease, it is not without unique legal and ethical implications. As a result of the increase in genetic testing and the greater availability of genetic information, legal issues regarding employment discrimination on the basis of genetic information are emerging. We are at the cusp of this remarkable revolution, and it is imperative that we have safeguards in place to protect workers as the technology develops.
In this country, people should be judged based upon their abilities, and not based upon fears, myths or stereotypes. Yet, with the expansion of genetic information available to employers, there is a risk that employers will misinterpret and misuse genetic test results to weed out persons according to their perceived health risks based on a genetic information. Furthermore, people may refuse to take genetic tests, a potentially life-saving measure, out of fear that employers may discriminate against them. For these reasons, genetic information does not belong in the workplace.
A number of surveys document the growing public concern over the use of genetic information for discriminatory purposes and show that some employers may use information obtained from genetic testing to try to lower their insurance and sick leave costs by screening out individuals who have traits linked to inherited medical conditions. The National Center for Genome Resources (NCGR) commissioned a national survey in 1998 to gauge the public's attitude toward genetic issues. The NCGR polled 1,000 people and found that an overwhelming 85 percent of those surveyed think employers should be prohibited from obtaining information about an individual's genetic conditions, risks, and predispositions. Data from the study also indicate that 36 percent of those surveyed would probably not take genetic tests, and 27 percent would definitely not take such tests if health insurers or employers could get access to the test results. Dr. Susan Root, Director of Human Genetics at NCGR, accurately expresses the dilemma the public faces regarding genetic testing: "People desire the information these tests can provide, allowing them to improve their own preventive measures, but also fear the impact the information may have on their own insurability, employability and confidentiality."
Researchers at Georgetown University conducted a similar study in 1995 and found that over 85 percent of the 332 people surveyed were very concerned or somewhat concerned about insurers and employers gaining access to, and using, genetic information in a discriminatory manner. The individuals polled for the Georgetown study had one or more family members with genetic disorders who were affiliated with genetic support groups. A vast majority of those surveyed -- 87 percent -- responded that they would not want employers to know if they were tested and found to be at high risk for a genetic disorder with serious complications. Seventeen percent also reported that they have not revealed known genetic information to their employers for fear of losing their jobs or insurance coverage.
Workers' fears of workplace discrimination, according to the Georgetown study, have prevented one out of ten respondents from getting tested for genetic traits linked to breast cancer, cystic fibrosis, Huntington's disease, colon cancer, or other conditions, even though early detection and treatment could possibly improve their lives. Fear of stigmatization has also been documented by the Department of Labor, which found that many women did not take advantage of genetic screening to determine the likelihood of breast cancer because they feared the information might be made available to employers or insurers.
When people who might benefit from genetic tests refuse to have them because of a fear of discrimination, negative consequences result for them as well as for the advancement of scientific research. Medical researchers have voiced concern about the refusal of potential subjects to participate in long-term medical studies that would help assess the risk of developing genetically linked diseases, such as various forms of cancer, because they believe that such involvement may be a "red flag" on their medical records and would result in discrimination.
Workers' fears of genetic discrimination are not baseless. Due to the fairly recent development of genetic screening and the inherent problem that exists in documenting such discrimination, there is only limited data gauging the extent of actual discrimination. However, cases of actual and anecdotal evidence of genetic discrimination in the workplace have been compiled.
As new biotechnology is emerging, so are cases of genetic discrimination as a result of the information obtained from genetic testing. As of August 1997, the Council for Responsible Genetics (CRG), a national bioethics advocacy organization, had documented over 200 cases of genetic discrimination. These cases document a range of genetic-based discriminatory actions by insurance companies, employers and others, against asymptomatic individuals with genetic predispositions to certain diseases. The CRG predicts that as the utility of genetic testing expands, and tests become easier and less expensive to administer, such testing may increase. This increase in genetic screening may ultimately result in the stigmatization of individuals based on their genetic makeup.
In a study conducted in 1989 to gauge the extent of genetic monitoring, the Congressional Office of Technology Assessment (OTA) found that 12 out of the 330 companies surveyed use some sort of biochemical genetic screening. Although none of the companies that responded anticipated using direct DNA screening over the next five years, OTA's survey data indicated that 42 percent of employers considered an applicant's health insurance risks in making employment-related decisions. These findings evidence "[t]he growing concern among employers over the rising costs of employee health insurance, and the increased efforts to reduce these costs to the employer, [which is] likely to increase the scope of health insurance screening in the workplace." The OTA concluded that employers' interest in containing healthcare costs may lead to an increase in genetic testing to identify applicants with "atypical subsequent health care demands."
Other survey data appear to support the OTA's conclusion that genetic screening may increase in the workplace. In 1989, a survey of 400 employers by Northwest Life Insurance found that by the year 2000, 15 percent of employers expected to check the genetic status of prospective employees and their dependents before making job offers. Similarly, the researchers at Georgetown found that 15 percent of respondents reported that they or affected family members were asked questions about genetic diseases or disabilities on job applications (although it is not clear how often this information was used to subsequently deny jobs to applicants). Thirteen percent of respondents reported that they or another family member had been denied a job or terminated from a job because of a genetic condition in the family. In another recent survey attempting to assess the extent of discrimination against individuals with genetic abnormalities who were otherwise healthy, genetic service providers and primary care physicians reported knowing of 582 people who were refused employment or insurance based on their genetic predisposition. The study's authors note that although this number is modest in relation to the total number of patients seen by the surveyed professionals, genetic discrimination does in fact exist.
The Americans with Disabilities Act (ADA) can be interpreted to prohibit employment discrimination based on genetic information. However, the ADA does not explicitly address the issue and its protections are limited and uncertain. Given the interpretation that many federal courts have been giving to the ADA's coverage provisions, it is unclear whether the courts would construe the ADA to cover discrimination on the basis of genetic information. In addition, in light of the accelerated pace of genetic discovery, the uniqueness of genetic information, the great potential for discrimination, and fear among workers, additional legislation may be necessary to ensure adequate protections in this area.
Title I of the ADA, the federal law that protects individuals seeking work or employed in the private sector from discrimination on the basis of disability, makes no explicit mention of genetic discrimination. In fact, the ADA does not specifically identify any single medical condition for protection. Rather, the ADA contains broad language prohibiting discrimination against a "qualified individual with a disability" in hiring, promotion, discharge, compensation, and other terms and conditions of employment. The ADA defines an individual with a disability as a person with one or more physical or mental impairments that substantially limit him or her in performing a major life activity, a person with a record of such an impairment, or a person who is regarded as having such an impairment.
The ADA covers an individual who has a genetically related illness or disability once it becomes manifest and substantially limits a major life activity. Moreover, the ADA has been found to cover individuals who have a prior record of a genetically related disability, for example, someone who has recovered from cancer. Yet, courts have still not determined whether the ADA should be understood to restrict discrimination solely on the basis of an identified altered gene.
In 1995, the U.S. Equal Employment Opportunity Commission (EEOC) adopted policy guidance stating that the ADA prohibits discrimination against workers based on their genetic makeup. To be protected under the ADA, people who have genetic markers must cross several thresholds. They must show that they either have an "actual" disability, a "record or" a disability, or were "regarded as" having a disability by an employer, and that the employer discriminated against them based on that perception. EEOC's policy guidance states that the third part of the definition of disability, the "regarded as" prong, covers individuals who are subjected to discrimination on the basis of a genetic predisposition to illness, disease, or other disorder, even if the disability has not yet manifested. In other words, the agency's view is that employers who discriminate against individuals on such a basis are regarding the individuals as having impairments that substantially limit a major life activity and therefore are violating the ADA. In the hypothetical example described in the EEOC guidance, an employer makes a conditional offer of employment and then learns that the candidate harbors a gene that increases her risk of colon cancer. Although the woman is healthy and may never get cancer, the job offer is withdrawn because of concerns about the possibility that she may contract the disease, which might negatively impact her future productivity and insurance costs. That woman, in the eyes of the EEOC, would be covered under the anti-discrimination protections of the ADA.
Although the EEOC has clearly stated its position that the ADA protects individuals with genetic markers from discrimination in employment, its policy guidance does not have the same force of law as a federal statute or regulation. The EEOC's position regarding discrimination based on genetic information has yet to be tested in the courts, and not all observers agree that the ADA applies to people who may not presently have a disease such as breast cancer, cystic fibrosis and certain types of colon cancer, but who have "unexpressed genetic conditions" that predispose them to those diseases. Many believe that the ADA may not sufficiently protect all employees from genetic discrimination and that the advent of new genetic technologies requires new legislation regulating employer use of such technologies to close the coverage gaps.
The need for additional, specific legislation to make explicit the prohibition against discrimination based upon genetic predisposition may be even more imperative given the U.S. Supreme Court's recent decisions interpreting the ADA. On June 22, 1999, the Supreme Court handed down a trilogy of decisions that altered the analysis of coverage of the ADA. Although none of these decisions concerned the issue of genetic markers, these cases restrict the definition of who is an individual with a disability, and thus, they may ultimately have an impact on the issue. To the extent that the theory of ADA coverage relies on the "regarded as" prong of the definition, these cases may be relevant due to the narrow approach the Court took in defining the major life activity of working.
In fact, three members of the Supreme Court have already indicated their reluctance to find individuals with genetic markers for debilitating diseases covered under the ADA. Chief Justice Rehnquist directly raised this issue in his dissent in Bragdon v. Abbott, which was joined by Justices Scalia and Thomas. As he states, "[r]espondent's argument, taken to its logical extreme, would render every individual with a genetic marker for some debilitating disease 'disabled' here and now because of some future effects." Justice Rehnquist's comments raise the question whether the justices would reject outright the ADA's protection of individuals with genetic markers.
Even if coverage under the ADA were found to exist, additional specific federal legislation may provide more appropriate protection from discrimination based upon genetic information than that offered under the ADA. For example, the ADA does not protect workers from requirements or requests to provide genetic information to their employers. Under the ADA, an employer generally may not make medical inquiries about a job applicant prior to extending a conditional offer of employment. However, once a conditional offer of employment has been extended, but before the individual begins work, the employer may obtain extensive medical information about the applicant, including genetic information. During this period, the ADA may not prohibit an employer from, for example, obtaining genetic information of job applicants, requiring genetic screening as a condition of employment or purchasing genetic information about applicants from a genetic information data bank.
In addition, once the applicant is hired, the employer may request that the employee take a medical exam, such as a genetic test, if the employer can demonstrate that the information from that test is job related and consistent with business necessity. This may be allowed, even though family medical history or genetic test information alone is not a reliable basis for concluding that someone has an actual disease and, therefore, should never have an impact on an individual's ability to perform their job. For example, in Norman-Bloodsaw v. Lawrence Berkeley Laboratory, the federal court of appeals for the Ninth Circuit ruled that an employer's practice of testing for, among other things, the sickle-cell trait without the employees' knowledge and consent, did not constitute a violation of the ADA. It is important to note that in this case, the plaintiffs did not allege that the defendants took any subsequent employment-related action on the basis of the test results or that the results had been disclosed to third parties. The court upheld the dismissal of the ADA claims on the following grounds: (1) that no job related action was taken against the plaintiffs as a result of the testing; (2) the lack of evidence of inadequate safeguards to protect the confidentiality of the information; and (3) the scope of the exams did not violate the statute.
If there had been specific federal legislation protecting against genetic discrimination at the time this case was brought, it is likely that the employer would have been prohibited from collecting this genetic information. Federal legislation, if based on the basic principles set forth in the interagency report Genetic Information and the Workplace, would prohibit an employer from requesting or collecting genetic information. In addition, legislation would make clear that genetic information should not be used as a basis for making employment decisions, while the ADA permits employers to rely on medical information in making employment decisions if the use of that information is job related and consistent with business necessity.
Finally, the ADA permits the disclosure of medical information in situations that would not be appropriate for disclosure of genetic information. For example, under the ADA, medical information may be disclosed to supervisors and managers about necessary restrictions on work. While specific information about the employee's disability-related limitations may be needed to identify work restrictions, and in some cases provide reasonable accommodation, legislation would make clear that genetic information is irrelevant to, and could not be sought, as part of these assessments.
The need for additional federal legislation to protect workers against genetic discrimination was articulated in an interagency report called Genetic Information and the Workplace that was jointly issued by the EEOC and the Departments of Labor, Health and Human Services and Justice in 1998. As stated in that report, "[f]ederal legislation is needed to ensure that knowledge gained from genetic research is fully utilized to improve the health of Americans and not to discriminate against workers." While the report recognizes that the ADA provides some protections against genetic discrimination, it recognizes that these protections are not sufficient in light of new advances in genetics.
In this report, the Administration proposed that Congress pass a law to ensure that discoveries made possible by the Human Genome Project are used to improve health and not to discriminate against workers or their families, and to set out the following basic protections that should be included in such legislation:
The interagency report also recognized that genetic testing and the use of genetic information by employers should be permitted in limited situations to ensure workplace safety and health and to preserve research opportunities. However, any genetic information obtained would have to be treated as a confidential medical record and kept in a separate medical file. The report also made clear that these recommendations should apply to public and private-sector employers.
In addition, in February of this year, the Administration issued an Executive Order to Prohibit Discrimination in Federal Employment Based on Genetic Information (Executive Order). It is the view of the EEOC that the Executive Order complements the protections already provided by the Rehabilitation Act, while at the same time enacting additional safeguards as recommended in the Genetic Information and the Workplace Report.
The Executive Order explicitly prohibits discrimination on the basis of protected genetic information in all aspects of employment in executive departments and agencies and limits federal employers' access to, and use of, genetic information. It prohibits federal employers from basing any job decisions on protected genetic information. While using medical information to determine whether someone can perform the essential functions of the job may be appropriate, the Executive Order makes clear that it is inappropriate to use genetic information to make employment decisions based upon one's predisposition to disease, medical condition, or disorder which has no bearing on his or her present ability to do the job.
The Executive Order also prohibits federal employers from requiring or requesting genetic tests as a condition of being hired, or from using such information as a grounds for denying promotions or assignments or evaluating an employee's ability to perform his or her job. Under the Executive Order, the disclosure of protected genetic information is prohibited and such information must be kept confidential and separate from personnel files. There are extremely narrow exceptions for the disclosure of genetic information and only one exception for requesting family medical history. Finally, pursuant to the Executive Order, the EEOC is responsible for coordinating federal policy prohibiting employment discrimination against individuals on the basis of protected genetic information and intends to provide further guidance to federal employers and affected individuals.
Mr. Chairman, while I believe that support exists for arguing that the ADA prohibits genetic discrimination under certain circumstances, in light of recent genetic technological developments and the development of case law under the ADA, the law does not provide the certainty and level of protection that is required in this sensitive area. The public needs assurance that genetic information will not be used against them as a grounds for denying job opportunities or taking adverse actions in the workplace. Without such assurance, workers will continue to refuse to take advantage of wonderful lifesaving diagnostic tools that could lead to the early detection and prevention of numerous serious medical conditions. This lack of certainty also places a heavy toll on the employer community, which has no clear guidance on when its actions may lead to liability. We look forward to working with the committee in the future to develop appropriate safeguards for workers against the misuse of genetic information.
Thank you. I will be happy to answer any questions you may have.
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Last Reviewed: March 17, 2012