On July 22, the House Education and the Workforce Subcommittee on Employer-Employee Relations held a hearing on the implications of genetic nondiscrimination on workers and their employers.
Explaining that the new area of genetic research has posed a “weighty challenge for public policy makers,” Chair Sam Johnson (R-TX) stated, “The possibility of unjust use of genetic information about individuals and their families must be addressed. Discrimination against a potential employee because they MAY get cancer some day is not acceptable. Employment decisions should be based on an individual’s qualifications and ability to perform a job, not on the basis of factors, genetic or otherwise, that have no bearing on job performance.” He added, “On the flip side if in an effort to prevent that sort of discrimination we define ‘genetic information’ too broadly, it could greatly upset some insurance markets, resulting in adverse selection.”
Rep. Carolyn McCarthy (D-NY) expressed her concern that people will not take advantage of genetic testing out of fear that they could lose their job or their health insurance coverage. She voiced her support for the Genetic Nondiscrimination Act (H.R. 1910). Sponsored by Rep. Louise Slaughter (D-NY), the measure would prohibit insurance companies and employers from using the results of genetic tests to deny coverage, raise insurance premiums, or make hiring decisions.
Kathy Hudson, director of the Genetics and Public Policy Center at The Johns Hopkins University, said that there are currently over 1,000 genetic tests available to patients or in development. She explained that the information collected in these tests “can provide a diagnosis and guide treatment decisions, prognostic information that can help tell the course of a disease, or probabilistic predictive information about the future risk of disease,” adding, “Within a dozen years, it may be common medical practice to test each one of us for our individual susceptibilities to common illnesses. This knowledge will allow the use of individualized preventive medicine to maintain wellness, rather than spending society’s health care resources on expensive and ineffective treatments for advanced disease. Genetic tests can also reveal how an individual will respond to a drug therapy and who will experience serious side effects. The future holds the possibility of pharmaceuticals that can target illnesses at the molecular level, truly revolutionizing drug therapy for diseases.”
Ms. Hudson voiced her concern that a person may not take advantage of the genetic tests “for fear their employer may gain access to the information and use it against the employee out of the belief that the employee will be too costly to employ and insure.” She acknowledged that the U.S. Equal Employment Opportunity Commission (EEOC) has interpreted the Americans with Disabilities Act (ADA) to provide protection against the use of genetic information by employers, but “the extent of those prosecutions is largely untested and unclear.” Ms. Hudson concluded, “When a woman goes to her doctor to discuss the possibility of having a genetic test to learn whether she has an increased genetic risk for a disease, there are many important issues to consider to understand what the results will mean for her medically and emotionally. How the test result will affect her treatment, what it will mean for her reproductive decisions, what it will mean for her family, and what it will mean for her, personally, to have this information about her own genome. It is my hope that soon, very soon, doctors can confidently tell their patients that while there is much to consider when deciding to have a genetic test, the threat that those genetic tests results might be used to deny her a job is not one of them.”
Testifying on behalf of the U.S. Chamber of Commerce, Lawrence Lorber, a partner with Proskauer Rose LLP, said that it would be “a major mistake” for Congress to enact the Genetic Nondiscrimination Act at this time because “existing federal laws already provide substantial protections against employer acquisition, disclosure, and misuse of genetic information.” He explained that the EEOC has determined that the ADA bars discrimination on the basis of genetic makeup for two reasons: 1) Discrimination based on genetics is tantamount to discrimination against an individual because he or she is regarded as having a disability; and 2) The possession of a genetic marker for a disease could constitute an actual disability even though the individual has not manifested symptoms of the underlying disease. Mr. Lorber said that in 1998, the Supreme Court found in Bragdon v. Abbott “that asymptomatic HIV (i.e., the disease had not progressed to the symptomatic stage) is a disability under the ADA. It reasoned that even though symptoms of the disease had not yet manifested, the danger of passing HIV on to one’s partner or children substantially limited the major life activity of reproduction.”
Mr. Lorber also noted that the Health Insurance Portability and Accountability Act (HIPAA) regulations “restrict employer collection, use, and disclosure of genetic information acquired through the administration of employer sponsored group plans.” In addition, Mr. Lorber said that Title VII of the Civil Rights Act of 1964, which bars discrimination on the basis of gender, race, color, religion, and national origin, would prohibit discrimination based on genetic makeup. He explained that Title VII would prohibit employers from requiring women to have tests for the BRCA1 or BRCA2 genes, which reveal a predisposition for breast and ovarian cancer, adding, “Nor could an employer specifically discriminate against a subgroup of individuals with the gene, if that subgroup is a class protected by Title VII. For example, it would be unlawful sex discrimination to refuse to hire women with BRCA1 and BRCA2 genes, unless the employer also refused to hire men with the genes.”
Mr. Lorber argued that the House and Senate bills to prohibit genetic discrimination “suffer from drafting problems,” adding, “Both would allow plaintiffs to use existing legal theories under Title VII to sue employers for failing to provide health coverage for specific gender-related conditions. According to the EEOC, sex and pregnancy discrimination provisions of Title VII require that employers who provide comprehensive health insurance also offer coverage for gender specific drugs, such as oral contraceptives…S. 1053 and H.R. 1910 borrow language from the relevant provisions in Title VII; thus, if these bills were to become law, the theory could be applied in the context of genetics.” In order to dispel patients’ fears of genetic testing, Mr. Lorber said that Congress should educate the public about the protections in current law against genetic discrimination. He noted that if Congress should decide to enact legislation, it should be targeted to protect “against discrimination based on the results of genetic tests. If drafted correctly, such a bill could get to the root of the problem (if there is indeed one) without imposing undue transactional compliance and litigation costs.”