Genetic anti-bias bill is back

Washington -- The seventh time may be the charm for backers of a bill to ban genetic discrimination in health insurance plans and the workplace.

The Genetic Information Nondiscrimination Act would make it illegal for insurers to deny coverage to a healthy individual based solely on a genetic predisposition to a specific disease and for employers to use individuals' genetic information in personnel decisions.

Rep. Louise Slaughter (D, N.Y.) introduced the latest version of the bill Jan. 22, the seventh time she has done so. A previous companion bill unanimously passed the Senate in 2005 but was stymied by unfriendly Republican House leadership, despite having a GOP co-sponsor.

The switch of House control to the Democrats has given the legislation's supporters new hope. The Senate Committee on Health, Education, Labor and Pensions approved a new bill nearly identical to the House measure with a 19-2 vote on Jan. 31. Hearings already have been scheduled in one of the three House committees the bill must pass through. The legislation has bipartisan support in both chambers.

The American Medical Association backs the bill. It would let patients take advantage of new tests, counseling and therapies "without worrying that such information could be used against them by their health insurers or employers," wrote Michael D. Maves, MD, MBA, the AMA's executive vice president and CEO, in a Jan. 24 letter to Slaughter.

President Bush also supports the measure. "If a person is willing to share his or her genetic information, it is important that that information not be exploited in improper ways -- and Congress can pass good legislation to prevent that from happening," he said at a Jan. 17 National Institutes of Health roundtable on cancer prevention.

Today, genetic testing's power is more hype than reality, but it will become more popular, said Nancy Stevens, MD, who served as medical director for the American Academy of Family Physicians' Annual Clinical Focus on Genomics in 2005.

"There's no way around the fact that more and more of this information is starting to exist," said Dr. Stevens, who is a professor of family medicine at the University of Washington in Seattle.

Physicians are more likely to order a genetic test because they've misunderstood what it can reveal for a patient and because certain tests, such as screenings for breast cancer genes, are marketed to patients and physicians, she said.

A family history is a much better tool for understanding a person's risk for disease, Dr. Stevens argued. Without that information, one test doesn't reveal much. It's not clear how much risk a person has if he or she tests positive for a disease gene and has no family history of it, she said.

Many researchers view genetic testing as a promising tool. But many are increasingly concerned that people's fears of having their results used against them could have a chilling effect on their willingness to participate in medical studies.

"If we utilize this information appropriately, it should make us a healthier society," said medical geneticist Joann Boughman, PhD, executive vice president of the American Society of Human Genetics. "It shouldn't work against us. It should work for us."

She acknowledged that very few lawsuits relating to genetic discrimination have come up.

Most Americans would give genetic material to help themselves, but support dwindles for more anonymous work, according to polls in 2006 of at least 800 adults each by Research! America, a nonprofit group advocating health research.

Sixty-nine percent would give genetic information to help their doctors diagnose and prevent disease, one poll indicated. But the number dropped to 48% when people were asked if they "would contribute a DNA sample to a national databank to be used only for health-related research."

Meanwhile, 76% agreed that Congress should pass a law protecting a person's private genetic information. When asked about how genetic material should be used, 86% strongly support it as a tool to identify criminals, but only 4% strongly support allowing employers and life and health insurance companies to use it.

More than 1,300 tests for genetic disorders exist. Five years ago that number was about 100, said Sharon Terry, president and CEO of the Genetic Alliance, a coalition of more than 600 patient advocacy groups.

Every state mandates newborn screenings for at least six diseases, including sickle cell disease, according to a January report by the National Newborn Screening and Genetics Resource Center.

Too much liability?

The U.S. Chamber of Commerce has been a key opponent of the bill because the organization feels it goes too far, according to Michael Eastman, executive director for labor policy.

Employers shouldn't have to face potential compensatory and punitive damages for accidental disclosures of genetic information.

"Ultimately, it will be difficult to separate genetic information from medical information," Eastman said.

The bill should punish the misuse of genetic information, not the mere collection of it, and should limit lawsuit awards to provable lost wages and other more concrete numbers, he added.

The legislation fails to preempt state laws and create a national standard, Eastman said. He added that the bill would create inconsistencies with the Americans with Disabilities Act, which already offers protection against discrimination, he said.

The Health Insurance Portability and Accountability Act of 1996 prohibits health insurance plans from using the results of a genetic test to deny coverage or to set premium rates for group health plans, according to America's Health Insurance Plans.

Dr. Boughman counters that the nondiscrimination bill is designed to safeguard undiagnosed people who might have family histories of certain diseases, a population that the ADA does not address. Meanwhile, HIPAA protects people in the group health insurance market, not the individual market, said the Genetic Alliance's Terry.

Groups on both sides of the issue, including the U.S. Chamber of Commerce and the American Society of Human Genetics, worked out some of their differences by talking with each other for more than a year.

"We've streamlined it tremendously," Dr. Boughman said.

For example, she said, the latest version of the bill allows people to make an administrative complaint instead of going straight to filing a lawsuit. Eastman agreed that the measure has improved but says more changes are needed.