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Genetic Discrimination Bill Passes House, But Opposition Remains

NEW YORK (GenomeWeb News) — Though the US House of Representatives in an unexpected vote last week passed the Genetic Information Nondiscrimination Act, opposition remains and it is uncertain if the current proposed bill will be signed into law.
On Wednesday, the House passed GINA as part of the Paul Wellstone Mental Health and Addiction Equity Act of 2007, introduced by Rep. Patrick Kennedy (D – RI), which would require health insurance companies to offer benefits for mental health and substance-related disorders under group health plans, by a vote of 264 – 148.
Passage of the bill was lauded by GINA’s House sponsor, Representative Louise Slaughter (D – NY). But whether attaching GINA to a different bill will help it pass the Senate, or if the concerns that led Senator Tom Coburn (R-Okla.) to place a hold on an earlier version of GINA have been addressed, are unknown at this point.
Congresswoman Slaughter said in a statement on Wednesday that because “most mental health diseases are genetically linked, GINA is a natural addition” to the Kennedy bill. That may become a point of contention to a group of 11 senators, who sent a letter to Democratic leaders in Congress last week raising “important concerns” about GINA.
In addition, President George W. Bush, who until very recently had stated his intention to sign a genetic protection bill into law if it hit his desk, last week announced certain oppositions both to GINA and to the Kennedy Bill in a policy statement.
After numerous nearly successful attempts at passage since it was first introduced in 1995, the essence of the genetic nondiscrimination bill has changed little over time. But as various technical and philosophical issues have been raised, it has grown longer and more detailed. During this period, it has passed in both houses of Congress more than once, but because it never managed to do so during the same session, the bill has not made its way to the White House.
GINA is designed to prohibit health insurers and employers from using genetic information improperly against consumers and employees. If it passes, Title I of the act would prohibit group health plans and health insurers from denying coverage or raising premiums for healthy individuals based solely on a genetic predisposition to developing a disease in the future. Title II in the bill seeks to bar employers from using genetic information in making decisions about hiring, firing, job placement, or promoting people.
GINA has consistently had the support of National Human Genome Research Institute Director Francis Collins. In testimony before Congress last year Collins said that “[m]any people are afraid that their genetic information will be used against them and are unwilling to participate in medical research or be tested clinically, even when they are at substantial risk for serious disease.”
Without legislation to protect against genetic discrimination, Collins continued, “we may never realize the full potential of genomic research, and, more importantly, of individualized approaches to health care.”

Last April, GINA cleared in the House with ease, passing with a vote of 420 for and 3 against. But Coburn stopped that momentum with a “hold” in the Senate, which could only have been broken if he decided to drop it, or if the Senate agreed to debate it for 30 hours and then to pass it with 60 percent of the vote.
Coburn, who has made a name for himself in the Senate by halting legislation that he views as wasteful spending, placed the hold on GINA because he was particularly concerned about legal protections for employers and for health insurance companies.
Over the last week, however, additional opponents have voiced further concerns over the bill.
In a letter expressing concerns about GINA sent to Democratic leaders in Congress last Tuesday, a group of 11 senators, including Coburn, suggested the bill is likely to see some more red ink.
“We believe the final draft of GINA should provide clarity to the health insurance industry, maintain the integrity of the underwriting process, and ensure accurate premium assessments,” the senators stated. They also are concerned about employers’ liability from the “inadvertent” collection of genetic data. 
That letter echoes many of the sentiments held by some vocal organizations representing business interests, including the US Chamber of Commerce, the National Association of Manufacturers, and the National Retail Federation, among others. Some of these groups have banded together to form the Genetic Information Non-discrimination in Employment Coalition.
Michael Eastman, who is executive director of labor policy at the US Chamber of Commerce, told GenomeWeb Daily News last week that some of the concerns his group shares with the senators could be straightened out with “only a minor technical fix.” But, he suggested, others may require more marking up.
Eastman described a situation in which an employee seeking to take a work leave to tend to an ailing mother divulges that the mother is suffering from breast cancer. In that case, Eastman said, by merely possessing that information, if this were a female employee, the employer would have accidentally violated the GINA law because of the genetic links and inherited risks of breast cancer.
Eastman told GWDN  that the USCOC is “not worried about employers actually discriminating based on genetic information,” but is concerned about so-called “gotcha lawsuits” that take advantage of broad legal language or unclear liability concerns.
The industry interests opposing GINA also would like to see punitive damages and compensatory damages more closely controlled and more business friendly, Eastman added.  
The White House said last week in a policy statement that it agrees with Coburn that there needs to be a clearer firewall between Title I and Title II, so that there isn’t confusion about whether legal issues are under the purview of the Public Service Health Act or the Internal Revenue Code.
There also is uncertainly about how GINA will affect laws that already are on the books in some states to protect against genetic discrimination.
Eastman characterized the recent surge in opposition to GINA as a sign that both the Bush Administration and the Senate have “taken a more in-depth look” at the law. “The White House’s position now is more specific than it used to be,” Eastman said, but he added that Bush has “always indicated he has concerns with existing legislation.”
In spite of the new challenges, Eastman said that there was hope that these issues could be worked out. “If the proponents of the bill adopted the suggestions in the [Senate] letter it would probably become law pretty quickly,” he said.
Even if the issues over GINA are hurdled in Congress, Bush also opposes the Wellstone act on the grounds that it would increase Medicaid drug costs and place new restrictions on physician-owned hospitals.
Susannah Baruch, a senior policy analyst at the Genetics and Public Policy Center at the Johns Hopkins University Medical Center, suggested that there may actually have been some movement on the earlier, stand-alone version of GINA that is still on Senator Coburn’s desk. She told GenomeWeb Daily News this week that a compromise may be close on the stand-alone bill, and that it may be likely to pass if some more kinks are worked out.
Baruch said there may have been “an agreement behind the scenes on many of these issues,” and that compromise language may have been agreed upon.
“There has been a good faith effort on all parts to work the language out,” Baruch said. “We’re so close to seeing it happen that I’d be surprised if the ‘hold’ held.”
Supporters are just happy now to see the bill moving after months stuck in a legislative limbo.
“We do not care if GINA goes by plane, train, or automobile – we just want to get it to the President’s desk,” Sharon Terry, president of the Genetic Alliance, told GWDN in an e-mail.
”We are delighted with the momentum for GINA,” she stated, adding that it is “wonderful to see a great effort made to secure these important federal protections.”

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