Bill barring genetic discrimination stalls in the House

Employers blocking the legislation fear the law would add to their liability woes; supporters say federal regulation is needed to protect patients and advance research.

By Kevin B. O’Reilly — Posted Sept. 26, 2005

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A unanimous vote in the Senate and unambiguous support from President Bush this year have not been enough to secure so much as a hearing in the House for a bill barring employers and health insurers from using genetic information in hiring, premium and coverage decisions.

In February, the Senate voted 98-0 in favor of the Genetic Information Nondiscrimination Act of 2005, which would amend federal health and employment laws to ban genetic discrimination, penalize violators and allow patients to sue for damages. An identical bill has garnered 120 co-sponsors in the House but so far failed to get a hearing despite having a Republican, Rep. Judy Biggert (R, Ill.), as the lead sponsor. Rep. Louise Slaughter (D, N.Y.) has championed the legislation for nearly a decade without success.

But supporters expect that the tide is turning.

"My hopes this year are much higher because we have a Republican champion this time," said Sharon Terry, president and CEO of the Genetic Alliance, a coalition of more than 600 genetic disorder advocacy groups.

There are 860 clinical tests for genetic disorders, said Roberta Pagon, MD, principal investigator at the University of Washington-Seattle's GeneTests, a publicly funded medical genetics information resource. Among the more commonly used are tests for cystic fibrosis, sickle-cell anemia and breast cancer, said Dr. Pagon, who supports the bill.

All but three states ban health insurers from limiting, canceling or denying coverage based on genetic information, and 33 states have laws prohibiting employers from basing hiring decisions on genetic information, according to the National Conference of State Legislatures.

"It's such a patchwork," said Joann Boughman, PhD, a medical geneticist and executive vice president of the American Society of Human Genetics, an 8,500-member group of genetic researchers, clinicians and counselors that supports the bill. "The state laws vary tremendously."

Dr. Boughman said that environment offers little reassurance to patients who are concerned about potential discrimination.

"We've found as professionals that we've all run into patients in counseling sessions who have not yet been discriminated against, but who have a major concern that they might be," she said. "People are avoiding testing and have declined to be in research studies because they are afraid of the consequences. We know the fear is very real."

Biggert's chief of staff said her office is working to educate other House members about the bill, but it's unclear whether it will be enough to overcome powerful opposition from employer groups, including the U.S. Chamber of Commerce and the National Assn. of Manufacturers.

"It seems like a law in search of a problem," said Lawrence Z. Lorber, chair of the chamber's Labor Relations Committee. Lorber argues that genetic discrimination already might be covered under the Americans with Disabilities Act. And if the ADA does not cover the issue, an amendment to that act would sufficiently address the concern and avoid adding another tort liability for employers, he said.

"The chamber's views are limited to avoiding redundancy," he said. "We don't want have to have pyramiding lawsuits."

One of the few documented cases of genetic discrimination was brought under the ADA and settled in 2002 for $2.2 million in damages. The Equal Employment Opportunity Commission, which brought the suit, has said that "the mere gathering of an employee's DNA may constitute a violation of the ADA."

Because it touches on health and employment law, the bill will have to pass three different House committees and could have its most ardent opponent in Rep. John Boehner (R, Ohio), chair of the House Education and Workforce Committee.

"There's no timetable for a vote or a hearing," said Steve Ford, a spokesman for the Workforce Committee. "Congressman Boehner's concern with this has been that we don't want any more mandates placed upon those who offer medical benefits."

AMA policy states that health insurers should be prohibited from requesting or using genetic information to deny, limit or cancel coverage or set premiums.

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Genetic privacy

The Genetic Information Nondiscrimination Act of 2005 would:

  • Prohibit group health plans and health insurers in group and individual markets from requiring genetic testing or from basing enrollment or premiums on information about a request for, or receipt of, genetic services.
  • Stop issuers of Medicare supplemental policies from discriminating on the basis of genetic information.
  • Extend medical privacy and confidentiality rules to the disclosure of genetic information.
  • Make it unlawful for an employer to discriminate against an individual or deprive an individual of employment opportunities because of genetic information.
  • Prohibit employers from collecting and disclosing genetic information.
  • Establish penalties for violations.

Source: HR 1227

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