Skip to main content Back to Top


Genetic Discrimination Stirs Controversy

Kate Traynor

The problem of genetic discrimination was aired during a recent debate about how the unraveling of the human genome could affect patient care in the future.

"What we have now is an immense amount of information about human genetics, and it's being applied to virtually every disease," said Robert Cook-Deegan, director of the Duke University Center for Genome Ethics, Law, and Policy. In clinical trials that incorporate genetic testing, Cook-Deegan said, study participants expressed concern that their personal genetic information could be used against them by employers or insurers.

Cook-Deegan made his comments June 24 at BIO 2003, this year's Biotechnology Industry Organization meeting, in Washington, D.C. The debate was one of a continuing series on the science of aging sponsored by the American Association for the Advancement of Science and the Alliance for Aging. Also presenting their viewpoints were Cynthia Pellegrini, chief of staff for Representative Louise Slaughter, D–New York, who is the sponsor of the Genetic Information Nondiscrimination in Health Insurance and Employment Act (H.R. 1910), and Henry Desmaris, senior vice president of policy and information at the Health Insurance Association of America.

Congress versus the insurance industry. Pellegrini said that Congress clearly needs to pass federal legislation like H.R. 1910 to prohibit genetic discrimination by health insurers and employers. Among other things, H.R. 1910 would forbid insurers from adjusting health plan premiums or enrollment eligibility based on information gained through genetic testing. Employers would likewise be unable to require genetic testing of employees or use the results of genetic tests to discriminate against workers.

Desmaris pointed out that the insurance industry must already comply with a patchwork of state laws that cover genetic discrimination and privacy concerns. He described the idea of a new federal law to prevent genetic discrimination as "a solution in search of a problem."

"It's my understanding that no one has yet found an example of discrimination by insurers based on genetic information," he said.

Some employers, however, have already been accused of using genetic information against their employees.

Pellegrini cited a discrimination case involving the Burlington Northern and Santa Fe Railway Company, which had conducted or planned to conduct genetic testing of blood samples from 36 employees who had sought workers' compensation and medical treatment for carpal tunnel syndrome. The employees said they had not consented to the testing, which could presumably be used as a medical basis to deny coverage for the illness. This case was settled out of court, with the company admitting no wrongdoing but agreeing to pay a total of up to $2.2 million to the affected workers.

Another case involved a woman whose employer fired her after learning that she had alpha1-antitrypsin deficiency, a genetic disorder that commonly affects the lungs and is expensive to treat. The firing of the employee was later found to be a violation of the Americans with Disabilities Act.

Fear factor. "While discrimination itself may not be happening that often, the fear of it is having a major impact on people's health care decisions," Pellegrini noted.

Representative Slaughter's office, Pellegrini said, has been contacted by health care practitioners who say their patients "want to take genetic tests, but they won't because they fear that the information is going to get in the wrong hands." Other patients, Pellegrini said, request anonymous testing to prevent the results from appearing in their medical records.

Cook-Deegan explained that, if the results of genetic tests appear in a patient's medical record, insurers expect to have access to the information when underwriting individual insurance policies. Patients are wary of having such predictive information—such as the existence of a gene that may be associated with the eventual development of Alzheimer's disease—in insurers' hands, he said.

Pellegrini said it is difficult to get people to speak publicly about genetic discrimination.

"Our office has encountered a number of people who have come to us and said, 'Yes, I have been the victim of genetic discrimination in health insurance, in employment,' " Pellegrini said. But when these people are asked to come forward and tell their stories to Congress, she added, they refuse to do so because they fear that they will be further victimized.

"The fear issue is certainly there," Desmaris acknowledged. But, he added, "I'm not sure a new federal law or an additional federal law is going to be able to address fear."

Current federal law. Desmaris said that the Health Insurance Portability and Accountability Act of 1996 (HIPAA) already provides "extensive protections" against genetic discrimination for the majority of insured Americans—those who obtain health insurance through an employer.

He noted that HIPAA provides less protection for the 16 million Americans who purchase individual health insurance policies. But a federal antidiscrimination law to regulate this market, he said, could lead to adverse selection, or the purchasing of policies only by those at greatest risk for genetic disorders. Such a situation could undermine the insurance market, which, Desmaris said, "is there to spread risk."

"What we are trying to do," Desmaris said, "is make sure that, in the individual market, the coverage is affordable for the people who need to purchase coverage on their own."

Pellegrini argued, without offering examples, that the nation "can keep coverage affordable if we structure our risk pools properly."

"We can do that without knowing whether there is a possibility that someone might develop a genetic disorder in 5, or 10, or 20 years," she added. "Most people are in a given health plan for 5 years or less. We don't need genetic information in the vast, vast majority of those cases to know if that person is going to get sick or not."

"We all have genetic flaws," Pellegrini said. "By not having a genetic discrimination law in effect right now, we are essentially punishing the people with the bad luck to carry the genes we discovered first."