Senate bill aims to ease fear of genetic testing
■ The medical community is pushing for a national standard of protections to encourage testing.
By Joel B. Finkelstein — Posted March 14, 2005
Washington -- Jeffrey Weitzel, MD, is familiar with the real fear patients harbor about genetic discrimination.
In an informal poll of his patients, more than half reported that they had concerns about the possibility that their genetic test results would be used against them, said the director of the clinical cancer genetics program at the City of Hope National Medical Center in Duarte, Calif.
And it's not just patients who are wary. Doctors are afraid of referring their patients for genetic tests, Dr. Weitzel said.
"Many times patients are either worried themselves about genetic discrimination or they were dissuaded from pursuing such an evaluation by their physicians," he said. This is because of the impression that the individual is "likely to suffer insurance discrimination, lose their insurance, lose their job or suffer any number of consequences because of that information."
Dr. Weitzel and others believe that these concerns are undermining genetic testing's potential. In just the past decade, the number of available tests has grown tenfold, to more than 1,000. Yet progress toward the broader adoption of these tests as the powerful predictive and diagnostic tools they are has been stymied by a lack of concise legal protections to reassure the public, experts said.
A bill passed unanimously in the Senate last month aims to address the problem by creating a national standard barring genetic discrimination by health insurers and employers.
The measure would prohibit insurance companies from denying or canceling coverage or raising premiums based on a patient's genetic information. It also would protect individuals from discrimination based upon their genetic information by employers, labor organizations, employment agencies and training programs. Insurers and employers also would be prohibited from requesting such information.
"This bill would enable and encourage patients to take advantage of genetic screening, counseling, testing and new therapies resulting from the scientific advances in the field of genetics without worrying that such information could be used against them by their health insurers or employers," AMA Executive Vice President Michael Maves, MD, wrote in a letter to Senate leaders.
Research consistently shows that the majority of patients are concerned about the potential for genetic discrimination. For example, in a survey last year by the Johns Hopkins Genetics and Public Policy Center, 94% of respondents said employers should not have access to their genetic information.
Striking a balance
There have been few legally challenged cases of genetic discrimination in employment. Cases in the insurance realm have stopped short of lawsuits.
But with no single, understandable standard of protections to point to when referring patients for genetic testing, many doctors feel compelled to warn their patients about the risk of discrimination, experts said.
These concerns are acting as a significant obstacle to genetic testing becoming a routine part of medical practice, test proponent say.
It's difficult to strike the right balance, said Kelly Ormond, president of the National Society of Genetic Counselors. "We don't want to scare patients, but we need to be realistic."
Physicians need to be aware that genetic testing constitutes a component of appropriate care, Dr. Weitzel said. Genetic testing has moved beyond the point of being experimental and should become a routine part of practice, he said. "We have established that it really needs to happen, but it's not," he added.
Dr. Weitzel recently published a survey of 271 clinical physicians attending a continuing education session that showed that more than half were not aware of existing legal protections, and many thought that patients with genetic mutations regularly have trouble getting insurance.
A large part of the problem is that the hodgepodge of federal and state rules designed to prevent genetic discrimination is often confusing and usually inadequate, experts said. State rules vary widely.
"Some [laws] are good, some bad," said Paul R. Billings, MD, PhD, vice president of biotechnology and health care strategy and senior geneticist at Laboratory Corp. of America in Burlington, N.C.
And even patients living in a state with a strong law eventually could move to one with poor protections, experts noted.
In comparison with the state laws, the federal legislation comes from a long history of comprehensive health information privacy efforts, he said. It is not perfect but would provide a good standard of protections as long as it does not preempt stronger state laws, he added.
Federal statutes, such as the Health Insurance Portability and Accountability Act and the Employee Retirement Income Security Act, also offer some protection. But those laws apply to only certain populations, such as group plans.
Approval of the Senate legislation, sponsored by Sen. Olympia Snowe (R, Maine), heartens test advocates. They believe that the measure will create the clarity that physicians and the general public need to feel assured that genetic tests will not be used against patients.
Despite the Senate bill's easy passage, the future of a federal law remains uncertain. Introduction of a bipartisan genetic nondiscrimination bill is expected soon in the House, but it faces significant hurdles, including poor support from that body's leadership and strong industry opposition.
Insurers argue that lawmakers are trying to legislate away a problem that doesn't exist.
An industry survey in the individual market showed that no plans are currently using genetic information to determine coverage or set premiums, said Janet Trautwein, vice president of government affairs at the National Assn. of Health Underwriters in Arlington, Va.
"We're just not sure what the impetus is right now for this legislation," she said.
But NAHU and another industry trade group, America's Health Insurance Plans, both have said the industry can live with the Senate bill.
In the past, both groups have opposed House measures, which they say too broadly define genetic testing.
"We need to be able to do our normal underwriting, the kind we do every day," said Trautwein.
Business groups, led by the U.S. Chamber of Commerce, also have opposed past genetic nondiscrimination bills. They cite fears that such a law would open companies to a host of new lawsuits.