WASHINGTON, DC – Despite a few holdouts in Congress blocking the passage of the embattled Genetic Information Nondiscrimination Act, the legislation is politically well-positioned for passage in this Congress, HHS Secretary Michael Leavitt assured participants at a conference on personalized medicine here this week.
“We have reason to hope that the final bill can be worked out and passed in both chambers this year,” Leavitt said at the Personalized Medicine Coalition event titled, “21st Century Medicine: Personalized and Evidence-Based.”
“Events in science are moving very fast in this area and the time has come for legislation protecting the personal genomic information from inappropriate uses in employment and health insurance,” he added.
The bill has been passed by the House and is likely to be signed into law by President Bush, but Tom Coburn, a Republican Senator from Oklahoma, has placed a “hold” on it. The bill still needs to be considered by the Senate.
H.R. 493 would make it illegal for group health insurers to deny coverage to people based solely on a genetic predisposition to a specific disease, and would bar employers from using genetic information when making hiring, firing, job placement, or promotion decisions.
Coburn’s legislative office has publicly said the senator has a number of objections and changes to the bill. His office did not return requests for interviews. However, an article featured on the Senator’s website suggests that he would like the bill to create a “firewall” separating people’s ability to challenge insurance decisions from their ability to legally dispute their employer’s determinations.
This is similar to the US Chamber of Commerce’s assertion that GINA would bring about frivolous lawsuits. As reported by GenomeWeb’s sister publication Pharmacogenomics Reporter in January, the Chamber of Commerce explains on its website that “if science progresses to the point where it is possible to determine that an individual is virtually certain to have a health condition posing significant risk to others, then employers should be able to make employment decisions based on this information.”
Although the legislation has its share of detractors, in a Democratically controlled Congress, the bill appears to have improved chances for getting passed. The measure has garnered broad popular support on the Hill, the backing of a majority of genetic counselors, and a favorable push from the Bush Administration.
At the conference, Robert Wells, Affymetrix’s vice president of corporate affairs and international markets, expressed concern regarding the few holdouts barring the passage of the bill in Congress, and sought Leavitt’s advice on how to get the bill over its hurdles.
“Once again, we find ourselves down to the short days in the legislative session. Once again, we have legislation that has passed overwhelmingly with bipartisan support and the President’s support, and support in both chambers. And, once again, we have one or two holdouts who seem to not want to let the legislation go forward,” Wells said. “How can we help you and how can you help us in these final days in the legislative session, to get that legislation across the line because it’s so important to so many of us?”
GINA was previously stalled in Congress for more than a decade. It was marked up in the House of Representatives for the first time in February, after being re-introduced on Jan. 16 by Representatives Louise Slaughter, a Democrat from New York, and Rep. Judy Biggert, a Republican from Illinois. Around 150 representatives co-sponsored the bill.
Levitt responded optimistically that the political framework is in place for the bill’s passage by year end.
“This is a political issue where the good news is everybody supports it except for a few. The good news is we’re going to get this done,” he said, advising participants at the conference, which included members of industry, government and academia, to “keep the pressure on.
“Members of Congress in both chambers who support it need to now hear about its priority. They need to relentlessly hear from the medical community how important this is for the future,” he continued. “The President wants it to happen, we’re pushing for it, members of Congress want it to happen from both parties. I believe that’s the formula to get it done. I feel optimistic it’ll happen in this Congress.”