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Genetic Discrimination Law Passes Senate with Compromises

NEW YORK (GenomeWeb News) – The US Senate today unanimously passed the Genetic Information Nondiscrimination Act after senators agreed to compromises that had held up the bill since last summer.
After over a decade of failed attempts to pass the law, which has passed both houses of congress more than once with wide margins, only never in the same session, GINA also is expected to pass in the US House of Representatives as early as next week and be signed into law “in short order,” Kurt Bardella, press secretary for GINA sponsor Olympia Snowe (R – Maine), told GenomeWeb Daily News today.
GINA “passed the house twice with considerable support,” Bardella said.
The bill, which would protect Americans from discrimination based on information from genetic tests, sailed through the House a year ago by a vote of 420 to 3, but never made its way to a Senate vote after it was placed on hold by Senator Tom Coburn (R – Okla.).
Coburn has since raised concerns about the bill focused primarily on the potential for lawsuits and employers’ rights. In March of this year, he and ten other senators signed a letter to the White House listing their complaints, signaling a new threat to GINA’s passage.
“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 in the letter.
Now, the lawmakers have agreed to a key compromise that would salve Coburn’s concerns by adding language to create a "firewall" between the parts of the bill dealing with insurers and employers, an adjustment Coburn and the White House said was needed to protect them from some lawsuits, a source on Capitol Hill told GWDN today.
The agreement included other "minor" changes having to do with phrasing, according to the source, who asked to remain anonymous.
Senator Coburn’s office was not immediately available for comment to explain further its stance on the compromises.
As GWDN reported in March, when GINA passed the house as an amendment to another unrelated bill, the Paul Wellstone Mental Health Act, Coburn had other concerns with GINA, and it was not immediately clear how many of these have been agreed upon.
According to Bardella, the Senate will call up the House version of the bill and then insert the changes into the new Senate bill before voting on it and sending it back to the House.
“The passage of GINA today represents the culmination of an effort that began more than ten years ago to put in place landmark protections to safeguard Americans against genetic discrimination,” Snowe said today in a statement.
"Utilizing genetic testing can improve health, reduce spending, and lower health care costs. Yet our laws have not kept pace with emerging technology, and doubts about the misuse of genetic information are preventing Americans from getting tested," she said.
Snowe’s office said it expects the House to pass the bill with unanimous consent and expects President Bush to put his name on it. “We expect the White House will be pleased to sign the bill into law,” Bardella said.
While the passage of the bill was the product of “thirteen years of work,” Genetic Alliance director Sharon Terry told GWDN today, the recent consensus was the result of “constant meetings between the White House, republicans and democrats.”
Terry described the effort for the compromise as a product of a “great conversation” between all parties involved and the engagement of the genetics community. The sudden advancement of consumer genomics businesses over the past year and greater discussion about the uses and ethics of genetic tests in the media could have helped push the bipartisan effort.
“Thirteen years ago,’ Terry said, “we were talking about only a few tests, and now we’re talking about mainstream medicine.”
“Our challenge now is to make sure that doctors and patients are aware of these new protections so that fear of discrimination never again stands in the way of a decision to take a genetic test that could save a life," Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University.
The pending passage of the bill also was lauded by the Personalized Medicine Coalition, a collection of industry, academic, payor, and other partners who advocate for the advancement of personalized healthcare.
“The guarantees provided by this legislation will encourage millions of Americans to use their genetic information to improve their healthcare, and to help prevent and treat cancer and other diseases,” Edward Abrahams, executive director of the PMC, said in a statement.
Mari Baker, president and CEO of consumer genomics services firm Navigenics, also applauded the Senate’s passage of the bill. “This is fundamental, foundational legislation that’s critical for the long-term ability of using genetic information to improve healthcare in this country,” Baker told GWDN today.
“With GINA passing, people can now have confidence that this information will not be used to discriminate against them, and this industry can move forward.”

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