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Senate votes to allay physician, patient fears over genetic tests

Now advocates for legislation banning genetic discrimination are pushing the House to act.

By Joel B. Finkelstein, amednews staff. Nov. 3, 2003.

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Washington -- Genetic information holds the promise of advancing disease prevention to a whole new level. A bill recently passed in the Senate would help ensure that the potential for genetic discrimination does not get in the way, physician groups and other advocates said.

The measure "would allow patients to make the decision [whether to get a genetic test] based on what is good for their health, instead of based on concerns about discrimination," said Yank D. Coble Jr., MD, immediate past president of the American Medical Association.

The legislation, which passed unanimously in the Senate, would prohibit health insurers and employers from using the results of patients' genetic tests against them. The bill's supporters are now encouraging the House to approve the measure.

"House consideration and passage of legislation are necessary to ensure the future success of the genetics field," Dr. Coble said.

A law is essential, according to Senate Majority Leader Bill Frist, MD (R, Tenn.). "We must protect consumers from the threat that their genetic information may be used to deny them access to health insurance coverage or to the benefits of employment," he said.

Dr. Frist was pivotal in bringing the measure to the Senate floor for a vote, according to Deven McGraw, policy counsel for the National Partnership for Women and Children, which heads up the Coalition for Genetic Fairness.

"The law really has not kept up with the science," she said. "As we've made these advances in mapping the human genome and coming up with markers for serious illnesses, ... there was always this fear among consumers that this information would be used against them, either to deny them health insurance or to hurt them in some way in their terms and conditions of employment."

While the bill has gained widespread support -- the American Assn. of Health Plans and the National Assn. of Health Underwriters have given it their tacit approval -- not everyone agrees that it is a good idea.

"Although this legislation is well-intended, and the sponsors have made every effort to carefully define key terms in the bill, health insurers continue to believe it will only add unnecessary and costly regulatory burdens without, in any way, improving consumer protections," said Donald Young, MD, president of the Health Insurance Assn. of America.

Dr. Young also argued that the privacy regulations under the Health Insurance Portability and Accountability Act may prove sufficient to protect genetic information, if the law is given time to be fully implemented.

But supporters of the genetic-nondiscrimination legislation say it would fill gaps in current law.

"It's an important addition to the ... privacy regulation because it covers the direct collection by employers and insurance companies that HIPAA didn't address," said Katharina Kopp, program manager at the Health Privacy Project in Washington, D.C.

The bill also would extend rights established under the Americans with Disabilities Act, which does not cover genetic conditions, she said.

Preemptive action

Still, some insurers and employer groups maintain that the bill addresses what is only a hypothetical problem.

"Independent research confirms that health insurers do not currently use genetic information in determining coverage or in setting premiums, nor do they plan to do so in the future," Dr. Young said.

The U.S. Chamber of Commerce also has come out against it. "This legislation is being considered even though there is no evidence that employers are, in fact, engaging in discrimination based on the genetic makeup of their employees," the chamber's executive vice president of government affairs, R. Bruce Josten, wrote to the Senate.

However, countered McGraw, "it makes sense sometimes to act when you recognize that there's a potential huge problem on the horizon."

Proponents of the legislation admit that few cases of genetic discrimination have been reported. But surveys suggest that a majority of patients believe that genetic information could and would be used against them.

That is enough to keep many patients away from screening, said Wendy R. Uhlmann, a genetic counselor at the University of Michigan. She speaks with many patients over the phone who never come in for testing because of such concerns, she said.

Physicians, genetic counselors and researchers are also concerned about patients coming in using aliases or requesting their genetic test results be kept out of their medical records.

While a patchwork of state laws has helped the situation somewhat, a federal law would go a long way to reassure these patients that their test results will be private and protected, Uhlmann said.

It creates obstacles to quality care when physicians are busy keeping secrets about patients' medical status, said Judy E. Garber, MD, MPH, an associate professor of medicine at Dana Farber Cancer Institute in Boston. Sometimes it's not clear whether patients or physicians are more concerned about the lack of protections on genetic information, she added.

"Some doctors have cautioned patients against testing because of privacy concerns," Dr. Garber said. A law is needed to "let us get back to what we are supposed to be doing -- the practice of medicine."

The right balance

For proponents, the legislation draws the right distinction between protecting genetic information and allowing rational use of testing.

For example, the bill protects not only the results of genetic tests, but the act of getting tested.

"People make presumptions about why you're getting tested for some genetic marker, ...which is exactly the kind of information you really don't want in the hands of your health insurance company, particularly if there is no law to keep them from dropping you or raising your rates to the extent that they have effectively dropped you from coverage," McGraw said.

But the bill would allow businesses to offer their employees genetic screening as part of a wellness program. Companies also would be able to require genetic testing in establishing a workers' eligibility under the Family and Medical Leave Act.

"We were pushing for a definition that was comprehensive enough to capture all the reasons why people could be discriminated against, but you don't want to do something that is going to create obstacles to getting health care," McGraw said. "We think this bill strikes the right balance."

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