Congress Acts to Protect Privacy of Genetic-Test Information

A measure that would protect Americans from discrimination by insurers and employers due to their genetic makeup or family history has overcome a major hurdle and passed the House of Representatives.

APA has urged Congress for many years to enact such a protective measure.

APA Medical Director James H. Scully Jr., M.D., said in a written statement about previous genetic discrimination legislation that such testing offers tremendous promise in identifying existing and potential health concerns. Without a strong, enforceable genetic privacy law, however, patients are sometimes reluctant to participate in clinical studies that require genetic testing, and others may forego potentially lifesaving treatment.

“Unlike other forms of bias, genetic discrimination is not based upon an obvious, visible trait,” said Sen. Olympia Snowe (R-Maine), who cosponsored the companion measure in the Senate. “To discriminate, one must actively seek out information on which to act.”

The Genetic Information Nondiscrimination Act (HR 493) aims to prevent such misuse. The bill, as passed by the House in April, would bar the use of genetic information to deny a person health insurance or job opportunities. The bill would also make it illegal for health plans or insurers to deny coverage or charge higher premiums to healthy people based solely on a genetic predisposition to a disease. Similarly, an employer could not use genetic information in making hiring, firing, or promotion decisions.

The bill, which would ban discrimination based on the results of genetic tests, protects holders of U.S. health insurance policies. According to report by the Congressional Budget Office, one result is that more people—currently estimated at about 600—would qualify for individual health insurance plans, since some insurers who sell such plans are already using genetic test results to deny coverage. The legislation would direct the departments of Health and Human Services, Labor, and Treasury to enforce the legislation's provisions.

Supporters of the bill said it was a necessary follow-up to the federal government's $3.7 billion Human Genome Project, which was completed in 2003. The bill is intended to ensure that the genetic information derived as a result of that research would not be used against patients.

Although there have been instances of discrimination against people with family histories of sickle cell anemia, Huntington's disease, certain cancers and other diseases, proponents of the bill, such as APA, said the wider impact is that concerns of abuse keep patients from screening and from participating in research.

As evidence of the need for action, Scully cited a Department of Labor report documenting that 63 percent of individuals surveyed said they would refuse to take genetic tests if insurers or employers could access their private results.

“A person's genetic information should only be used with his or her informed, voluntary, and noncoerced consent,” Scully said.“ Protecting patients' genetic information is critical to providing the highest quality medical care.”

Bill supporters highlighted a recent effort by the National Institutes of Health to offer women genetic testing for breast cancer in which nearly 32 percent declined to take it, due to concerns about health insurance discrimination should the tests show they may be at risk.

President Bush supports such nondiscrimination legislation, and in an April statement administration officials said concerns about unwarranted use of genetic information threatens the utilization of existing genetic tests, as well as future research.

The bill also would establish a Genetic Nondiscrimination Study Commission to review the developing science of genetics and advise Congress on the need for further action.

Genetic discrimination bills were introduced in two previous Congresses and approved by the Senate but not taken up by the House. The Senate Health, Education, Pensions, and Labor Committee approved similar legislation (S 358) in January.

Sen. Tom Coburn (R-Okla.) has placed a hold on the current Senate bill. Coburn, a physician, raised concerns that the bill could have unintended consequences for claims processing, medical records, and information sharing with law enforcement. He also criticized the Senate measure for failing to prohibit discrimination against embryos that have been found to be at risk for disease through genetic testing prior to implantation.

The U.S. Chamber of Commerce also opposes the legislation because “it seeks to not only punish employers for discrimination using genetic information but for collecting the data in the first place.”

The legislation would require employers to obtain their workers' written authorization before collecting such data.

Before passing HR 493, the House added a provision to bar discrimination on the basis of genetic information derived from parents and their offspring for preimplementation genetic diagnoses, amniocentesis, or other reproductive testing or techniques developed in the future. To date, 43 states have enacted laws to prohibit the use of genetic information by individual-market health insurers. At least 30 states have laws that prohibit genetic discrimination by employers.

Supporters said only a federal law will prevent all health plans and health insurers in all markets from rejecting applicants, charging them more, or excluding or limiting covered benefits based on genetic information.

Although no court cases related to mental health have been brought on the basis of genetic discrimination, a December 2001 report in the Journal of Medical Ethics noted a Hong Kong case in which a court ruled that it was unlawful for the civil service to discriminate in employment against people with a family history of mental illness.

The text of the House bill (HR 493) and the Senate bill (S 358) is posted at<http://thomas.loc.gov/>. Enter the bill code to access the text.▪