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Johns Hopkins Center Launches Genetic Rights Educational Effort

NEW YORK (GenomeWeb News) - Johns Hopkins University’s Genetics and Public Policy Center has launched an educational effort aimed at informing the public of how their genetic data can and cannot be used under the recently enacted Genetic Information Nondiscrimination Act.
As part of its so-called “Project GINA,” the GPPC plans “to disseminate information” about the legislation to healthcare stakeholders and the general public, GPPC Law and Policy Director Susannah Baruch told GenomeWeb Daily News sister publication Pharmacogenomics Reporter last week.
As part of its plan, the GPPC will launch a web site describing and explaining the federal law that bars health insurers and employers from discriminating based on genetic data. The website, slated to launch in September, will outline what protections are provided under the law, contain a FAQ page, and will provide updates describing how federal and state regulators are implementing the law.
Until the launch of the site, however, GPPC is providing information on GINA under the “What’s Happening” heading on its homepage.
Since GINA became law in May, GPPC Director Kathy Hudson has said that the center intends to spearhead a “major education campaign” to inform “doctors and patients … 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."
Ahead of the website’s launch, GPPC has made preliminary efforts to educate the public and stakeholders about the law through peer-reviewed publications, webinars, and fact sheets. GPPC recently hosted a series of webinars with the Bureau of National Affairs and has disseminated informational fact sheets describing GINA’s provisions.
Additionally, Hudson co-authored an article in June in the New England Journal of Medicine with Francis Collins, former director of the National Human Genome Research Institute, and M.K. Holohan, an NHGRI senior health-policy analyst, asserting that “it will take much more than sound regulations to ensure that we reap the full benefits” of GINA. 
GPPC said it plans to work with Jeremy Gruber of the National Workrights Institute and Karen Pollitz of Georgetown Health Policy Institute to specifically target information to clinicians, health insurers, employers, researchers, ethics boards, and state legislatures. The center will also assist agencies charged with implementing provisions for GINA, Baruch noted.

A comprehensive version of this article appears in this week's issue of Pharmacogenomics Reporter.

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