On July 20, the Senate Health, Education, Labor, and Pensions Committee held a hearing to discuss genetic information in the workplace. Committee Chair James Jeffords (R-VT) opened the hearing saying, “Decoding the human genome will yield advances in science that will help us live longer and live healthier. While this is certainly exciting news, we recognize that knowledge of our genes, and their effects or potential effects, could be used against us.” Specifically, the committee examined to what extent current law—the Americans with Disabilities Act (ADA) and the Health Insurance Portability and Accountability Act (HIPAA)—protects workers from genetic discrimination.
In an effort to curtail the misuse of genetic information, the President on February 8 signed an Executive Order prohibiting federal agencies from basing any job decisions on genetic information; however, the executive order only applies to federal employees. Advocates argue that further protections must be enacted.
Under the ADA (P.L. 101-336), individuals qualify as disabled if they have a physical or mental impairment that substantially limits one or more life activities, if they have a record of that impairment, or if they are regarded as having such an impairment. The ADA prohibits discrimination against disabled individuals in hiring, promotion, discharge, compensation, and other terms and conditions of employment. While the law does not specifically mention genetic discrimination, many have interpreted the ADA to include discrimination based on genetic information.
In 1995, the Equal Employment Opportunity Commission (EEOC) issued a guidance stating that the ADA prohibits discrimination against workers based on their genetic make-up. “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 is not manifest,” stated Paul Miller of the EEOC.
While stating that the ADA could be interpreted to prohibit employment discrimination based on genetic information, Mr. Miller noted, “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.” Additionally, the EEOC’s guidance has not been tested in courts and according to Mr. Miller, “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.”
HIPAA (P.L. 104-191) also provides some protection against genetic discrimination. Under the law, health insurers are prohibited from excluding an individual from group coverage because of past or present medical problems, including genetic information. Health insurers are also prohibited from charging a higher premium to an individual with a preexisting condition. The law specifically states that genetic information in the absence of a current diagnosis shall not be considered a preexisting condition.
However, the law does not prohibit health insurers from denying coverage to individuals seeking coverage in the individual market based on genetic information, nor does it prohibit insurers from charging these individuals higher premiums based on genetic information. Additionally, the law does not limit the collection or disclosure of genetic information by a health insurer.
Dr. Francis Collins of the National Human Genome Research Institute at the National Institutes of Health detailed the importance of protecting genetic information, particularly in light of the recent announcement that scientists have mapped the entire human genome. “Already, with but a handful of genetic tests in common use, people have lost their jobs, lost their health insurance, and lost their economic well being due to the unfair and inappropriate use of genetic information,” he stated, adding: “It is estimated that all of us carry dozens of glitches in our DNA—so establishing principles of fair use of this information is important for all of us.”
Noting the importance of genetic discrimination to women, Susannah Baruch of the National Partnership for Women and Families said, “From the earliest pre-natal testing, to more recent and sophisticated breast and ovarian cancer screening, women have had and will continue to have a great deal at stake in the genetics revolution.” She added: “Women already struggle to weigh the potential benefits of genetic testing, and the valuable medical care that testing can indicate, against the potential economic and emotional harm that knowledge—of a potential birth defect or predisposition to illness—can bring.”
Members discussed legislation (S. 1322) that would prohibit the use of genetic information by employers and insurers to discriminate against individuals. The measure would cover all genetic information including an individual’s family history. Under the bill, employers would be prohibited from collecting and disseminating genetic information without an individual’s consent. Bill sponsor, Sen. Tom Daschle (D-SD), told the committee, “Our challenge is to make sure history does not repeat itself. We need to ban discrimination based on potential disabilities—just as we have banned discrimination based on actual disabilities.” Rep. Louise Slaughter (D-NY) has sponsored companion legislation (H.R. 2457).
While most witnesses expressed support for S. 1322, two witnesses cited concerns with the bill. Susan Meisinger of the Society for Human Resource Management stated that the bill “takes a very broad approach in defining genetic monitoring, services, tests, and information….Simply doing a family history work-up as part of a physical could be illegal.”
Harold P. Coxson, Jr., Esq., expressed his concern about the potential for litigation abuse. “I am concerned that this legislation, with an overly broad definition of genetic information and unlimited liability for compensatory and punitive damages, may actually serve to foster litigation and workplace disputes.”
