A recent Supreme Court ruling has fostered a fledgling legal strategy that could protect people from discrimination based on their genes. The ruling suggests that the power of the Americans with Disabilities Act (ADA) might extend to people who are genetically predisposed to disease--before they fall ill.
As researchers identify genes associated with diseases such as breast cancer, colon cancer, or Huntington's disease, the danger arises that employers or insurance companies could discriminate against people who carry genetic defects. No federal law specifically protects people from genetic discrimination. 'It's about all of us, folks,' said Francis S. Collins, director of the National Human Genome Research Institute in Bethesda, Md. 'We're all at risk for something.'
Lawyers, scientists, genetic counselors, advocates for the disabled, and congressional staffers met Feb. 19 in Washington, D.C., to brainstorm about legal protections for people who carry identified genetic risk factors. The conference, sponsored by Collins' institute and the National Action Plan on Breast Cancer of the Public Health Service, focused on last year's Supreme Court case Bragdon v. Abbott.
In that ruling, an HIV-positive plaintiff was found to be protected under the ADA even though she had not developed any symptoms of AIDS. The woman sued her dentist after he refused to fill her cavity. The ADA defines as disabled, and therefore protected under the act, any person who is limited in a 'major life activity.' The plaintiff argued that she met this criterion because, after learning that she carried the AIDS virus, she decided not to have children. The court agreed, in a 5-4 decision.
Bragdon v. Abbott demonstrated that the ADA can extend to people who may, sometime in the future, develop a disease. Because it rested on the plaintiff's decision not to have children, however, a strict interpretation of that ruling would not protect people whose reproductive choices are unaffected by their genetic risk factors, said Paul Miller, commissioner of the Equal Employment Opportunity Commission in Washington, D.C. 'The broader question is whether the ADA protects against discrimination on the basis of diagnosed but asymptomatic genetic conditions--those that have the potential to limit major life activities,' said Miller. The ADA should apply in such cases, he said.
Whether it will is an open question. The commission would vigorously support a test case, Miller said, and might use a legal strategy that does not rely on major life activities. The ADA also protects people who are 'regarded as' disabled, he pointed out. Arguably, someone denied a promotion because of a genetic risk factor would be regarded as disabled by the employer and therefore covered under the ADA.
Ideally, identifying genetic risks for disease should help tailor health care to individuals, said genetic counselor Jill Stopfer of the University of Pennsylvania Cancer Center in Philadelphia. For example, women with mutations in the genes BRCA1 or BRCA2 have a heightened risk of developing breast and/or ovarian cancer. Such women may choose to have frequent mammograms, take anticancer drugs such as tamoxifen, or undergo prophylactic removal of cancer-prone tissue, says Stopfer.
Fear of discrimination, however, deters some women from being tested, said attorney Kathy Zeitz of the Nebraska Methodist Health System in Omaha. Her daughter, who has a family history of breast cancer, refuses to undergo genetic screening for fear that she may someday be denied health insurance.
Future congressional action could render ADA-dependent legal strategies obsolete. Last year, lawmakers introduced seven bills that would protect people with genetic risk factors from discrimination in employment or insurance coverage or both. Although none passed, one (H.R. 306) has been reintroduced and several more are expected in the upcoming months. Legislation is urgently needed, as Collins summed up at the end of the conference, because no one is confident that adequate legal safeguards exist.
