WASHINGTON — The breakthroughs in genetic research that have allowed doctors to determine whether people may carry more risk of contracting certain diseases have been accompanied by fear of how such information could be used. Doctors might see the information as a way to approach a diagnosis or preventive care. But what about those whose interests are financial? What if a health insurer learned a person was genetically disposed to diabetes? Or an employer found out a female worker had genetic markers indicating a high risk for breast cancer? Congress has been aware for years that information gleaned from DNA testing could be used to discriminate in health care coverage — either through being denied participation in a plan or by facing higher premiums — and jobs. Legislation aimed at prohibiting insurance companies and employers from using genetic information to make coverage or employment decisions has passed the Senate in previous years, but never cleared the House. Most states, including Oklahoma, have their own laws about the use of the information, but a federal law would provide uniform protection. This year, the House overwhelmingly approved the Genetic Information Nondiscrimination Act, and it looked like it would breeze through the Senate and, at last, become law. But Sen. Tom Coburn, R-Muskogee, put a "hold” on the bill, preventing quick Senate passage. And it's not clear how, or whether, his objections can be resolved in a way that doesn't turn other lawmakers against it.
Coburn holding the billThe seemingly straightforward concept of trying to protect people from discriminatory uses of predictive genetic information has become bogged down in a thicket of complex technical questions about legal remedies, how genetic information can be collected and discussed, and even how a genetic "test” is defined. "I totally support what this bill is trying to do,” Coburn said in a recent interview. "We're trying to solve this.” But some Senate staff members working on the issue said Coburn is not going to get everything he wants and will have to compromise for the bill to pass. Coburn, who has put "holds” on numerous other bills that were up for unanimous consent passage, said he would let them go through "when I agree 100 percent that something should become law.” The bill has two main sections, or titles. One addresses discrimination by health insurers and the other addresses employment discrimination. The remedies for discrimination against health insurers are relatively narrow. But someone with a complaint of being fired or denied a promotion because of his or her genetic information could file a broader civil rights lawsuit. Coburn's office has been seeking a "firewall” between the two titles to ensure the violations are kept separate. Without it, he contends, someone with a complaint against an insurance company could sue the insurance company and sue his or her employer that provides the insurance coverage because the coverage could be considered one of the "terms, conditions and privileges” of employment. "It puts people under double jeopardy,” Coburn said. A Senate staff member who has been working on the bill said there was no firewall in the bill approved unanimously by the Senate in 2005. Coburn supported that bill. Moreover, Coburn said, the definitions of "genetic test” are different in the two titles. The definition in the title concerning employers is broader, raising even more concerns on Coburn's part about complaints being filed against employers when an alleged offense was committed by the insurance company. The staff member working on the bill said people working on it had addressed "a laundry list” of objections raised by Coburn, including his insistence that unborn children be included as part of the families that are protected against discrimination. Some people "outside the loop” of those working on the bill believe Coburn is raising "poison pill” objections to try to kill the bill, the Senate staff member said. Coburn denies that.
White House supportThe White House supported the House bill when it passed, saying "concern about unwarranted use of genetic information threatens the utilization of existing genetic tests as well as the ability to conduct further research.” Though a White House statement said the administration wanted to work with Congress "to further perfect” the bill, the statement did not mention any specific concerns. A group called the Coalition for Genetic Fairness, which includes dozens of medical associations and foundations and the American Civil Liberties Union, has been pushing hard for passage. The U.S. Chamber of Commerce opposed the House bill, saying it would "invite frivolous litigation and abuse,” a complaint similar to Coburn's. Whether a compromise can be reached remains to be seen. Aaron Cooper, Coburn's press secretary, said Coburn's office was negotiating "like crazy” with the main Senate sponsors of the legislation.