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Archive for April 24th, 2008

visit this site: http://www.genome.gov/24519851 to find the history of this act, including:

Legislative Chronology
Testimony
News
White House Support

Genetic Information Nondiscrimination Act: 2008

NHGRI Director Francis Collins testifies at a March 14th, 2007 House Ways and Means hearing. NewUpdate: On March 5, 2008, the U.S. House of Representatives passed the Genetic Nondiscrimination Act (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.

Representative Louise Slaughter (D-NY) attached GINA to the Kennedy bill. Congresswoman Slaughter said that because “most mental health diseases are genetically linked, GINA is a natural addition.”

GINA has yet to be voted on in the Senate.

The progress of GINA’s passage through the legislative process can be tracked on this pag: http://www.genome.gov/24519851
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this is an article from the “modern healthcare” site:

Congress appears to be nearing agreement on a bill that would prohibit health insurers from denying coverage to otherwise healthy individuals who have a genetic predisposition to develop a disease. A Senate vote on the Genetic Information Nondiscrimination Act could be held Thursday, congressional sources said.

The bill would also bar employers from using genetic information for hiring, firing, job placement or promotion decisions.

Sponsor Rep. Louise Slaughter (D-N.Y.) has been trying to get the bill through Congress for 13 years, although those attempts have been thwarted in both the House and Senate through various actions by Republican lawmakers.

“By prohibiting the improper use of genetic information, (the bill) encourages individuals to seek early treatment for genetic-based diseases and participate in the studies needed for the future medical breakthroughs of the 21st century,” Slaughter has said in written statements.

The House by a wide margin finally approved the bill last year. In a more recent action, provisions of it were also included in a mental health parity bill that cleared the House in March.

Changes were made to the Senate version, however, to address the concerns of Sen. Tom Coburn (R-Okla.), who has been exercising his authority as a senator to block the bill’s consideration. Coburn’s argument has been that the bill may pose unintended liability risks for insurers and employers.

Congressional sources said that Coburn’s concerns have been met under the amended version of the bill. — by Jennifer Lubell

What do you think? Post a comment on this article and share your opinion with other readers. Submit your comments to Modern Healthcare Online at mheditorial@crain.com. Please be sure to include your hometown and state, along with your organization and title.

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from “fiercehealth”: like so many others, i have concerns about all of the genetic testing that seems to be swirling around us. i thoroughly understand what benefits there are from understanding our genetic coding and how that can help in developing new treatments. no doubt it’s an important research and treatment tool. however, with the “information age” becomming what it is, there must be concerns of how much information should be available, and to whom? where will the lines be drawn or moved? yes, bills like this, promising to protect our information, could help with genetic research (as many are fearful to be involved because of concerns about where their genetic information might go). well, this bill seems interesting but is a part of a much larger picture and continuation of a saga that…has far to go. because of all the implications this has with big insurers, big pharma…all the “bigs”…who can always know what move on the “chess board”, in the game of “big” vs the people, this is, but…there is always one detail, a loophole, or something i tend to miss…so if something is not kosher about this…let me know!

2. Genetic discrimination bill progressing in Congress
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After more than a decade of attempts, it looks like Congress might finally pass a bill that would block health insurers from denying coverage to otherwise healthy persons based on their genetic predisposition to come down with a particular disease. The bill, the Genetic Information Nondiscrimination Act, also would bar employers from using genetic info as part of hiring, firing, job placement or promotions. The House approved the bill last year, and the Senate is expected to vote on it this week. The Senate version, however, attempts to make the bill easier on insurers. The changes are a concession to Sen. Tom Coburn (R-OK), who has blocked the bill, arguing that it could impose unintended liability risks.

If this bill passes, it could have important implications for the future of personalized medicine. Right now, some researchers studying gene-specific effects of treatments are finding that some subjects won’t participate due to fears that their data will be used in just the fashion proscribed by this legislation.

To learn more about the bill:
– read this Modern Healthcare piece (reg. req.)

Related Articles:
Genetic discrimination ban gains support
Fearing insurer backlash, patients avoid genetic tests

Genetic testing advances as insurers balk


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