On July 20th, 2000, representatives of the Human Genome Project, the Equal Employment Opportunity Commission, the Society for Human Resource Management, and the National Partnership for Women and Families testified before the Committee on Health, Education, Labor and Pensions’ Hearing on Genetic Information in the Workplace. Their statements are available at: http://www.senate.gov/~labor/legisl/106a/106a.htm. They were testifying in response to the Genetic Nondiscrimination in Health Insurance & Employment Act of 1999 (S.1322/H.R. 2457)
Dr. Francis S. Collins, director of the National Human Genome Research Institute (NHGRI), testified in support of S. 1322/H.R. 2457. He stated that the misuse of genetic information could have serious repercussions in terms of individuals’ access to employment and to health insurance and could also affect the continuation of genetic research. He pointed out that genetic research could improve human health but that it can also be used unjustly “as the basis for insidious discrimination”.
Collins gave the example of an individual who reveals to his potential employer that he is a carrier of a disease and subsequently is denied employment. He states that individuals cannot be denied employment because they have a high risk of a disease if they have the ability to perform the job. Individuals are now afraid to be genetically tested, even though the test could lead to treatment and prevention of the disease. They are concerned about who may get the information and that their employment or their health insurance could be affected.
Dr. Collins also points out that people are not as willing to participate in genetic research because they fear the results will fall into the wrong hands.
He concludes that the challenge is “to nurture scientific exploration, encourage the translation of these new discoveries into life saving medicines, and to put in place public policies reflective of our core American values that prevent the unjust, unfair, and discriminatory use of genetic information.”
The Ethical, Legal, and Social Implications (ELSI) Program and Legislative Change
In 1995 the ELSI Program, part of the Human Genome Project, made recommendations to prevent the misuse of genetic information by health insurers and by employers. The health insurance recommendations were published in Science Magazine (Oct. 1995) and played a role in Congresses passing of the Health Insurance Portability and Accountability Act (HIPPA).
In 1996, the ELSI Working Group, health care professionals, lawyers, representatives from the insurance industry, and federal government agencies drew up a list of recommendations for state and federal policy makers to protect against discrimination in employment decisions.
The group made five recommendations, published in the October 1996 issue of Science Magazine: employers be prohibited from using genetic information in hiring unless it is job related; employers be prohibited from requesting genetic information as a condition of employment unless they can prove that it is necessary; employers be prohibited from accessing employees’ genetic information in medical records; employers be prohibited from releasing information without the individuals written authorization; and finally violators of these provisions would be subject to right of action.
These recommendations were a model for President Clinton’s Executive Order of February 8, 2000 that protects 2.8 million federal government workers from workplace genetic discrimination.
The full texts of these five recommendations are available at: www.nhgri.nih.gov/About_NHGRI/Der/Elsi/napbc2.html
Other Points of View
Susan Meisinger, speaking for the Society of Human Resource Management, and Harold P. Coxson Jr., a lawyer, both suggested that the legislation (S.1322/H.R. 2457) was overly broad in its definition of genetic information, and by allowing direct access to the courts and bypassing the administrative procedures of the EEOC, invited litigation. Meisinger argued that if the Americans with Disabilities Act (ADA) did not offer enough protection against genetic discrimination, it could be amended to meet this need. Paul Miller, Commissioner of the EEOC, said that protection under the ADA was “limited and uncertain” and that new legislation would be necessary because the ADA did not protect employees from requests for medical information by employers.