Buffalo News: Bush signs genetic bias bill into law; Slaughter played key role in getting measure passed

May 22nd, 2008

President Bush on Wednesday signed the bill that Rep. Louise M. Slaughter calls the most important piece of legislation she has ever passed, the bill that Sen. Edward M. Kennedy calls “the first major new civil rights bill of the new century.”

But the new law—which bans discrimination on the basis of a person’s genetic makeup—might have been the last major civil rights bill of the last century if majority rule had been working in the House of Representatives.

Instead, the Genetic Information Nondiscrimination Act—which is expected to lead to astonishing medical breakthroughs—languished for longer than it takes for a first-grader to become a college student.

Blame it on business interests and, in recent years, a little-known congressional staffer named Nandan Kenkeremath, who helped ensure the bill remained undone.

And credit its passage to Slaughter and a little-known congressional staffer named Pete Goodloe, who proposed the final compromise that led to what lawmakers from both parties are calling a very good law.

“By definition, we had a hill to climb to get this bill passed,” said Joann Boughman, executive vice president of the American Society of Human Genetics. “But sometimes it certainly seems that Capitol Hill is more like a mountain.” Slaughter, D-Fairport, began that climb 13 years ago. A microbiologist by training, Slaughter was clued in to the evolving revolution in genetic research long before most of her colleagues, Boughman and several other sources said.

Scientists at the National Institutes of Health were beginning work on their mapping of the human genome, a vast research project that promised to discover the genes that were at the root of countless illnesses.

Their discoveries were expected to open the door to new treatments for diseases ranging from cancer to Parkinson’s disease.

But a big obstacle—fear—stood right out in front of that door.

Health insurers were afraid to insure anyone with a genetic condition. Businesses were afraid to employ them. And individuals were afraid to get any of the growing number of genetic tests that could help them begin preventive therapies, all out of fear that insurers and employers would discriminate against them.

After meeting with Dr. Francis S. Collins, the head of the human genome project, and other genetics experts, Slaughter tried to change all that by introducing the first version of the genetic discrimination bill in 1995.

Slaughter went to work and quickly garnered 76 co-sponsors. By 1997, prominent Republicans like Rep. Jim Walsh of Syracuse and Rep. Dan Burton of Indiana—one of the House’s most conservative members—had signed on. And by 1999, the bill had the support of 221 House members from both parties, meaning it would pass if it came up for a vote.

But that turned out to be a big if.

Three different committees had jurisdiction over the bill, meaning it inevitably faced a torturous path to passage.

What’s more, the U.S. Chamber of Commerce and other business interests pressed the argument that the bill could prompt countless lawsuits.

“The business community came in, and they turned out to be quite capable of keeping it squelched in the House,” said Sharon F. Terry, president of the Genetic Alliance.

Year after year, the Republican leadership refused to push the bill to the House floor, which was just fine with the health insurance industry, which worried that the bill did not entirely fit in with previous federal laws governing health insurance.

And in Nandan Kenkeremath, health insurers found an extraordinarily tenacious advocate to press their concerns.

At a hearing on the bill a few years ago, Kenkeremath, a GOP staffer on the the Energy and Commerce Committee at the time, appeared behind committee members and handed them notes with sharp questions about the bill.

“It was hysterical,” Terry said. “Nandan would appear behind every one of these committee members and hand them notes and they would start saying: ‘Well, what about blah blah blah?’ These members were happy to parrot exactly what Nandan was telling them. It was like a cartoon.”

To hear Kenkeremath tell it, though, he was just doing what congressional staffers routinely do. Most notably, he pressed for and won changes that addressed the insurance industry’s worries. “All of this stuff was by way of improving the bill,” he said.

What’s more, Kenkeremath said no one should make too much of the fact that he was fighting a bill that a majority of House members had co-sponsored. “That always happens,” he said. “There must be hundreds, thousands of bills like this. Just because a member co-sponsors a bill doesn’t mean it’s going to work. Members co-sponsor bills because they sound good.”

The bill sounded plenty good to Rebecca Fisher, a breast cancer survivor who testified in support of the bill at a hearing in 2004.

“My daughter has the BCRA1 [breast cancer gene], like I do,” said Fisher, whose husband, Samuel, is a Hamburg native. “My two sons have it and can pass it on to their daughters. And yet people in my family were afraid of getting tested for it” out of fear their diagnosis would lead to discrimination.

Stories like Fisher’s kept interest in the bill alive—and, in fact, built momentum for the measure in the Senate, where a version of it passed in 2003 and in 2005.

But in the House, the GOP leadership continued to block it. And Slaughter said it still might be blocked if Democrats hadn’t taken control of the chamber in the 2006 election.

Soon afterwards, Rep. George Miller, the new chairman of the House Education and Labor Committee, went to Slaughter and vowed to get the bill passed.

And that’s just what happened, by a margin of 420-3, last year.

All that was left was for the Senate to pass the measure again—but thanks to a senator nicknamed “Dr. No,” that was easier said than done.

“Dr. No”—Sen. Tom Coburn, R-Okla.—placed a hold on the bill, preventing it from coming up for a vote. “I am concerned that this could benefit trial lawyers more than it would protect patients,” Coburn said in an e-mail to bill supporters last fall.

And so staffers working on the bill went back to the drawing board to try to satisfy Coburn’s concerns. And that meant going back to Kenkeremath, who acknowledged working with Coburn’s staff to bottle up the legislation.

Finally, Pete Goodloe, a Democratic staffer from the House Energy and Commerce Committee, offered a compromise. He proposed clarifying the language erecting the “firewall” between the part of the bill affecting health insurers and the one affecting employers so that no one could press for relief under both parts of the bill at the same time.

And at about 4:30 p.m. April 17, Coburn’s staffers agreed to that proposal.

From then on, everything was a formality. The Senate and House passed the final version of the bill and sent it to Bush, an ardent supporter who called for its passage in his 2007 State of the Union Address.

Bush signed the bill in the Oval Office, praising it for protecting “our citizens from having genetic information misused.”

News Staff Reporter Phillip Lucas and News wire services contributed to this report.

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