WASHINGTON, Sept. 12 (UPI) -- There is a desperate need for federal laws to protect people from discrimination if they have a genetic mutation that puts them at increased risk for developing disease in the future, experts testified Thursday at a congressional hearing on genetic privacy.
A federal rule that goes into effect Oct. 15 would allow doctors to release to health insurance companies, without patient consent, the results of genetic testing that may indicate a future risk of developing a disease.
Health insurers could use that information to increase premiums or deny coverage, Joanne Hustead, senior counsel for the health privacy project and a professor at the Institute for Health Care Research and Policy at Georgetown University, testified before the House Judiciary's subcommittee on the Constitution.
"People should be asked at the outset if they consent to the disclosure of that information," Hustead told United Press International.
The rule first was proposed by the Clinton administration in 2000, but just last month the Bush administration removed key provisions that required consent for releasing genetic testing information, Hustead said.
Deborah Peel, a psychiatrist and president of the Mental Healthcare Foundation who testified at the hearing, told UPI, "Oct. 15 is really going to go down in history as the date that we completely lost our privacy."
Once the public becomes more aware of the implications of this rule, genetic privacy will become just as big an issue as abortion and gun control, she said.
John Rowe, chairman and chief executive officer of the health insurance giant Aetna, said there is no reason to prevent insurers from having access to genetic testing information because there are no "identifiable cases in which people have been discriminated against in health insurance based on genetic information."
Tom Miller, director of health policy studies at the Washington-based think tank Cato Institute, concurred. He said health insurers "have no incentive to turn away apparently healthy customers, or even somewhat less healthy ones ... based merely on possible long-term genetic risks that remain hard to measure."
Peel, however, pointed out "most of the people who have been discriminated against, don't know it." They are turned down for a job or they are denied insurance coverage, but there are no requirements to keep a paper trail of how medical information is shared so it would be difficult to prove discrimination, she said.
Hustead said whether insurers are misusing genetic information is irrelevant because recent surveys have found most people are so worried about discrimination they say they would avoid genetic testing or seeking reimbursement from their insurers.
Peel said she often feels like she has to read the Miranda warning to her patients and tell them everything they reveal can and will be used against them.
Rowe argued another reason not to prevent insurers from having access to genetic testing information is that it would impair insurers from providing appropriate medical care to patients. As an example, he cited the case of a person with a gene that increases their risk of developing colorectal cancer. These people should get screened more frequently than the general population and insurers could only approve coverage of the additional screening if they knew these individuals had the colorectal cancer gene, he said.
Miller said it is unfair to prohibit insurers from using genetic information and thus allow high-risk individuals to get the same coverage as those with low genetic risk of disease.
"We should more carefully weigh the consequences of regulatory interventions that essentially are aimed at assuring that genetically high-risk individuals are able to obtain bargain premiums from and transfer their losses to a private pool of lower risk insurance customers or their employers," he said.
"One's right to privacy should not include the right to misrepresent oneself to the rest of the world, particularly in the case of making statements to one's health insurer or employer that one knows to be false," Miller added.
He noted society does not provide similar protection "for other forms of 'bad luck' in life's genetic lottery, such as less desirable levels of traits like intelligence, aggressiveness or physical appearance that have at least some genetic roots."
Peel refuted Miller's arguments, noting that allowing insurers to have access to genetic information is a violation of constitutional rights to privacy. The release of medical information without consent has come before the Supreme Court and every time justices have said it is invasion of privacy and struck down the cases, she said.
Hustead said a bill introduced in the House last year could help close some loopholes and prevent genetic discrimination. The Genetic Nondiscrimination in Health Insurance and Employment Act would prohibit health plans, insurers and employers from using protected genetic information to discriminate with regard to enrollment, premium rates or employment.
A total of 266 members of Congress have signaled their support for the bill, including more than 50 Republicans.
