Washington, DC - July 23, 2008 - Since its founding, the Genetics and Public Policy Center has worked toward passage of legislation outlawing discrimination by health insurers and employers on the basis of genetic information. Happily, these years of effort culminated in passage of the Genetic Information Nondiscrimination Act (GINA) on May 21, 2008. However, this is only the beginning of the Center’s involvement. The Center has now launched “Project GINA” to disseminate information to a range of audiences on GINA’s protections and requirements.
“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 potentially life-saving genetic test,” said Kathy Hudson, director of the Center.
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, which included potential ways to expand protections, in the New England Journal of Medicine. With the help of Jeremy Gruber of the National Workrights Institute and Karen Pollitz of 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.
To distribute this information, the Center will soon 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 September 1.
Issue brief – The Genetic Information Nondiscrimination Act
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