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Genetic Information Nondiscrimination Act (GINA)
WHAT'S NEW

President Bush signed the Genetic Information Nondiscrimination Act (GINA) of 2008 into law on May 21, 2008 and all aspects of the law have been in effect since November 21, 2009. GINA makes it illegal for health insurers or employers to discriminate against individuals based on their genetic information.

This site aims to help patients, health care providers, insurers, and employers understand their rights and obligations under the new law. In addition to providing information about the protections afforded under the law, the site will house updates on how federal and state regulators are implementing the law. Members of the public are encouraged to email Center staff with questions.

06/01/10 With genetic testing becoming increasingly pervasive in medical care and our daily lives, three of the most prominent organizations in genetics—the Genetics and Public Policy Center at Johns Hopkins University, the National Coalition for Health Professional Education and Genetic Alliance—have teamed up to produce educational materials about the Genetic Information Nondiscrimination Act (GINA).

 

The materials, written to be accessible to the public and serve as a resource to health-care providers, are meant to ensure that all stakeholders are educated with regard to the benefits of the law.

 

 FOR THE PUBLIC                                     

 

  •  Understanding GINA                                                                                     

 

  •  GINA & You                                                                

 

 

 

FOR HEALTH CARE PROVIDERS

 

 

 

 

With any general questions on GINA or these materials, please contact GINAinfo@jhu.edu or the Genetics and Public Policy Center at (202) 663-5976.

 

Development of these materials was supported by a grant from The Pew Charitable Trusts.

 

 

For additional information:

 

Consumers visit Genetic Alliance: http://www.geneticalliance.org

 

Health Professionals visit National Coalition for Health Professional Education in Genetics: http://www.nchpeg.org

 

12/10/09 Responding to an American Heart Association letter signed by 250 organizations including GPPC, Department of Health and Human Services Secretary Kathleen Sebelius recently affirmed the administration's support for strong GINA regulations related to wellness programs.

 

2/09 The U.S. Equal Employment Opportunity Commission (EEOC) recently released a Notice of Proposed Rulemaking implementing the employment-related provisions of the Genetic Information Nondiscrimination Act (GINA). The Center's law and policy director, Susannah Baruch, provided invited testimony at a public meeting about the proposed regulations. GPPC and the Council for Responsible Genetics also submitted comments to the EEOC on the proposed regulations.

 

On October 10, 2008, the U.S. Departments of the Treasury, Labor, and Health and Human Services put out a Request for Information (RFI) to obtain public comment on the health insurance provisions of GINA.  At that time, the Center crafted an extensive analysis and model comments.  After reviewing all submitted comments, on February 20, 2009, the Center submitted additional comments responding to some of the issued raised by other stakeholders.  The federal agencies have not yet issued a Notice of Proposed Rulemaking.