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Genetic Discrimination Subject of Two Hearings

This week, a House subcommittee and a Senate committee held hearings to discuss forms of genetic discrimination. The hearings follow a July 11 House Energy and Commerce Subcommittee on Commerce, Trade, and Consumer Protection hearing on the subject (see The Source, 7/13/01, p. 3).

House Hearing
On July 24, the House Education and the Workforce Subcommittee on Employer-Employee Relations held a hearing to discuss genetic discrimination in the workplace. Specifically, the subcommittee heard testimony on current employment law, state genetic discrimination laws, and current employment practices.

Subcommittee Chair Sam Johnson (R-TX) stated that “employment decisions should always be based on a potential employee’s qualifications and ability to do the job well, not on factors—genetic or otherwise—that have no bearing on job performance.” He noted that this would be the first of several hearings on the issue.

Cheye Calvo of the National Conference of State Legislators discussed the state perspective in framing legislation on genetic nondiscrimination. “State lawmakers understand that the role of law for human genetics is to guide the technologies—not to control them. In turn, they have enacted genetics protections as preventive measures to guard against misuse before it becomes widespread, and promote the use of these technologies to extend, enhance and save lives,” he said.

Eric Rolfe Greenberg of the American Management Association (AMA) detailed the association’s most recent employer survey on genetic testing. Since 1987, the AMA has administered health-related surveys to employers. Beginning in 1997, the survey included a question regarding genetic testing, which revealed that roughly 5 percent of companies were performing genetic testing. However, in 1999, after revising the definition of genetic testing in accordance with the National Institutes of Health’s (NIH) definition, the survey revealed that only three out of 1,054 companies performed genetic testing. In 2000, seven out of 2,133 companies performed genetic testing, and in 2001, only two out of 1,627 companies performed genetic testing.

“It is easy to create nightmare scenarios in which people are judged not by their abilities but instead by their genetic propensities and sus-ceptibilities….But human resource managers in major U.S. firms have to deal with reality, not fantasy, and insofar as AMA research can tell, the reality is as stated: genetic testing is rare; where done it is performed with the health and safety of workers foremost in mind; and it is widely misunderstood,” Mr. Greenberg stated.

The subcommittee also heard from Hal Coxson of the Genetic Information Nondiscrimination in Employment Coalition. He stated that while research demonstrates that employers are not performing genetic tests, “there are equally compelling polls, however, which reveal that whether or not such fears are rationally based, employees fear that such information will be used by employers to discriminate.” Mr. Coxson noted that these fears are based on anecdotal evidence, saying, “There is little empirical evidence of widespread genetic discrimination in employment.”

Additionally, Gary Avary, an employee of the Burlington Northern Santa Fe Railroad Company who was threatened with disciplinary action by his employer when he refused to take a genetic test, testified before the subcommittee.

Senate Hearing
On July 25, the Senate Health, Education, Labor, and Pensions Committee held a hearing to examine genetic discrimination in the workplace, as well as through health insurance. Committee Chair Edward Kennedy (D-MA) opened the hearing, saying that “the danger of genetic discrimination is very real.” Sen. Kennedy also announced that further hearings would be held in September.

Sen. Mike Enzi (R-WY) stated that he supported legislation to prevent genetic discrimination in health insurance and employment; however, he added that the legislation “must be consistent with existing federal employment, civil rights, and privacy laws.” For that reason, he opposed a bill (S. 318) sponsored by Senate Majority Leader Tom Daschle (D-SD).

Sen. Daschle testified before the committee in support of his bill. Like the House companion bill (H.R. 602), sponsored by Rep. Louise Slaughter (D-NY), S. 318 would prohibit discrimination in health insurance coverage and employment practices based on genetic information. “We must not wait until it’s [genetic discrimination] a widespread problem,” urged Sen. Daschle, adding, “Experts have been warning Congress that we should pass comprehensive protections.”

Dr. Francis Collins of the National Genome Research Institute at the NIH also testified in support of the legislation. “It’s time to reassure the American public that the revolution of genetic medicine will be used for their benefit and not for their harm,” he said, noting that a recent poll revealed that 84 percent of Americans believe that genetic information will be useful to them; however, over half of the respondents also believe that the information could be misused.

Kathleen Zeitz of the National Breast Cancer Coalition agreed with Dr. Collins. “The potential for genetic discrimination makes women afraid to share necessary information with their health care providers and to take advantage of genetic technologies,” she said, telling the committee that her daughter had decided not to be tested for a breast cancer gene for fear of discrimination.

Ms. Zeitz added, “These women, concerned that their health and genetic status may affect their children in the future, have warned them not to disclose the existence of the disease [breast cancer] when sharing their family history with doctors.”

Additionally, the committee heard testimony from David Escher, another employee of the Burlington Northern Santa Fe Railroad Company, who was unknowingly subjected to a genetic test by his employer.

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