The Coalition for Genetic Fairness is a group of organizations, industry groups, individuals and employers dedicated to “address[ing] the growing concern surrounding the misuse of genetic information in insurance and employment decisions. The Coalition’s objective is to urge Congress to pass comprehensive federal legislation outlawing genetic discrimination and to educate the public about these protections”
Some of the institutions and companies that have become members of this coalition include Affymetrix, the American Academy of Family Physicians, Nature Genetics, National Psoriasis Foundation, 20th Century Fox, 23andME, and many others. OpenHelix is proud to say we too are members of the coalition and fully support its aims. (You too can join)…
We at OpenHelix are in full support of open access to genomic data and research, it’s what we train on, but we would, and would hope our laws would, draw the line at opening up personal genomic data to any and all who’d like to use it. Individual genomic data should be personal and not used to discriminate in employment or access to insurance.
In light of this, please help get GINA passed.
GINA, or the Genetic Information Nondiscrimination Act, “will protect individuals against discrimination based on their genetic information when it comes to health insurance and employment. These protections are intended to encourage Americans to take advantage of genetic testing as part of their medical care.”
It’s had a long history of failure, since 1995 at least, even when supported by the vast majority of legislators. There is a long history of hold ups and blocks. This legislation is necessary if individuals are to ever to be able to use their personal genomic data to further their health needs without fear of employment reprisals or insurance denials or premium increases.
Currently it has it’s greatest chance of passage:
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.
Francis Collins, director of the National Human Genome Research Institute (NHGRI), has testified before the House to get this passed and many have worked hard and their work has found success in the House.
It is now up to the Senate. Senator Coburn (R-OK) has put a hold on the bill in the Senate, the only chance is to get the bill to the senate floor for a vote (where it has passed the senate by over 90 before). You can help do that by getting Senator Reid to make GINA a priority. Please call your senator.