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 bill
The 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.