House passes ban on genetic discrimination

Washington -- A measure outlawing the misuse of genetic information by health insurers and employers passed the House late last month, 12 years after the first bill of its type was introduced.

The House approved the Genetic Information Nondiscrimination Act of 2007 in a 420-3 vote on April 25. It would prohibit health insurers from using genetic information to determine health plan eligibility or to set premiums. It also would bar employers from using the same information in hiring, firing, job placement or promotion decisions.

President Bush issued a Statement of Administration Policy in support of the bill April 25. The House bill has 224 co-sponsors, including 95 Republicans. The Senate version has 32 co-sponsors, including nine Republicans. In recent years similar bills twice have passed the Senate without an opposing vote.

The House measure -- reintroduced in January after a year of negotiations between stakeholders -- moved through that chamber quickly under Democratic leadership. Republican leaders opposed genetic nondiscrimination bills for years despite steady bipartisan support.

The American Medical Association voiced support for the House legislation when it was introduced.

The measure's future in the Senate was unclear at press time. Sen. Tom Coburn, MD (R, Okla.), placed a hold on the Senate bill -- meaning it needs 60 votes to pass -- because he was concerned that it lacked language preventing insurers from using prenatal genetic testing results to limit coverage of fetuses and pregnant women, said his spokesman Aaron Cooper. Language addressing this issue was added to the House bill as it passed through three committees this spring. Legislation supporters were considering sending the House version to the Senate for adoption, but no decisions had been reached by press time.

Full passage of the measure would allow Americans to embrace genetic research in a way not seen yet, said Sharon Terry, president and CEO of the Genetic Alliance, a coalition of more than 600 patient advocacy groups.

"We will see an acceleration in the use of tests to better manage health care and an increase in clinical trials," she said.

Opponents and skeptics said the legislation is a solution looking for a problem, but supporters said the bill tackles hidden issues.

Rep. John Kline (R, Minn.), at a House Education and Labor subcommittee hearing earlier this year, agreed that people should not have to fear that their genetic information would be used against them but added that there have been few lawsuits concerning the issue.

"To go after a mosquito with a machine gun might not be the best way to solve a problem," he said.

R. Bruce Josten, executive vice president for government affairs for the U.S. Chamber of Commerce, wrote an April 24 letter to House leaders acknowledging that lawmakers have made a few technical improvements to the legislation since it was introduced. But Josten said the organization still opposes the bill because it would radically change employer processing of health care information, open the door to frivolous lawsuits and fail to clarify the patchwork of state laws concerning medical records and genetic nondiscrimination. The measure calls for employers to keep genetic records separate from other health records, for example.

The bill's advocates, such as its sponsor, Rep. Louise Slaughter (D, N.Y.), said the lack of protections is producing a chilling effect on health care and research.

Americans are increasingly reluctant to participate in genetic testing for preventive medicine because they fear the results will be used against them one day, she said. Those who get genetic screenings are paying for them on their own to keep the results private.

"It's an underground medical phenomenon that's going on," she said.

The federal government should set a national standard on genetic discrimination, Slaughter said. Thirty states already have passed genetic nondiscrimination laws, she said. A Slaughter aide said it wasn't clear how many state laws the House version would preempt.

America's Health Insurance Plans President and CEO Karen Ignagni wrote a letter supportive of the bill to House leaders on April 24. She said the House committee process was inclusive and that AHIP supports the principles behind the legislation.

"The bill ... offers a balanced, constructive approach to establishing new protections with respect to both nondiscrimination and protection of genetic information," Ignagni said.

The Genetic Alliance's Terry said that even if the Senate passes the bill, work on genetic nondiscrimination legislation isn't finished. The measure covers only health insurance, not long-term care or life insurance. That's something Congress should deal with in the future, she said.

For now, the measure's supporters are still working on Senate passage. After 12 years and seven versions, this legislation's time has come, Slaughter said.