Genetics And Public Policy Center Provides GINA Resources

Main Category: Genetics
Article Date: 14 Aug 2008 - 3:00 PDT

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Years of effort on the part of activists, members of Congress, and their staff members culminated in passage of the Genetic Information Nondiscrimination Act (GINA) on May 21, 2008. "After a very long wait, Americans can now be confident that their genetic information cannot be used by health insurers or employers in harmful or hurtful ways," said Center Director Kathy Hudson in a statement on the bill's passage through the Senate. "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."

To address that need, the Center has now launched "Project GINA" to disseminate information to a range of audiences on GINA's protections and requirements.

Following GINA's passage, the Center generated a widely-distributed fact sheet summarizing GINA's provisions. More recently, the Center co-hosted with the Bureau of National Affairs the first of a series of webinars highlighting what GINA does and does not do. Additionally, Hudson co-authored an article on GINA in the New England Journal of Medicine. With the help of Jeremy Gruber of the National Workrights Institute and Karen Pollitz of the Georgetown Health Policy Institute, the Center will continue to take the lead in disseminating information on GINA; developing informational materials for patients, clinicians, health insurers, employers, researchers, and ethics boards; and providing assistance to the agencies charged with implementing GINA.

The Center soon will launch a dedicated Web site on GINA issues. In addition to providing information about the new protections afforded under the law, the new site will contain updates on how federal and state regulators are implementing the law. Members of the public will have the ability to email Center staff with questions, which will be compiled into a frequently-asked-questions Web page. This one-stop shop on GINA will be available beginning in September. For now, the Center's GINA resources can be found under the "What's Happening" heading on our homepage.

Written by - Katherine Groff

Issue brief - The Genetic Information Nondiscrimination Act

Genetics & Public Policy Center - Johns Hopkins Unversity