President George W. Bush signed the Genetic Information Nondiscrimination Act (GINA) into law on May 21, 2008. GINA prohibits discrimination against individuals on the basis of genetic information in both health insurance and employment. The Coalition for Genetic Fairness informs the GINA regulatory process, addresses the needs of stakeholders, and creates and disseminates a variety of educational materials, resources, and tools.

The Coalition for Genetic Fairness: What’s New?

Webinar on GINA’s Implementation

On December 3 at 12:00 PM ET, CGF and Genetic Alliance hosted an informational webinar entitled GINA Implementation: What’s New?. The webinar included an update on the Genetic Information Nondiscrimination Act and used the Request for Information (RFI) on GINA as an opportunity to discuss the benefits and limitations of the legislation. Furthermore, webinar participants learned how to submit comments to the RFI, due December 9, 2008.

Learn more and view webinar materials

RFI on GINA in the Federal Register

Currently, the various agencies that will enforce GINA, including the Equal Employment Opportunity Commission (EEOC) and the Departments of the Treasury, Labor, and Health and Human Services, are writing regulations for the legislation. The preliminary drafts of these regulations, both for the health insurance and employment protections from genetic discrimination, will be released in the coming months. They will provide clear guidance on the parameters of GINA.

On October 10, the Departments of the Treasury, Labor, and Health and Human Services submitted a Request For Information (RFI) in the Federal Register, soliciting comments from the general public for Title I of GINA, pertaining to health insurers in the group, individual, and Medicare supplemental policy markets. Public comments were due December 9, 2008. The CGF undertook the process of responding to the RFI. Utilizing the comments crafted by the Genetics and Public Policy Center, (click here to view the Genetics and Public Policy Center’s analysis and model comments) the members of the CGF Executive Committee developed draft comments to propose to the wide CGF membership.”

View the RFI from the Departments here.

View the CGF response to the RFI here.

GINA Online Resource Update

On November 10, the Coalition updated its online GINA resource entitled, What Does GINA Mean? A Guide to the Genetic Information Nondiscrimination Act. In addition to the outline of the legislation’s protections from genetic discrimination in health insurance and employment, the updated guide includes new examples and resources to facilitate discussion about GINA and its impact. The Coalition encourages individuals to utilize the guide to answer general questions, and organizations are welcome to put the guide on their websites, link to it, or adapt and customize it to your communities. The Coalition will continue to release updates to the online and print versions of the guide as information about GINA’s implementation and impact are clarified through the regulatory process.

View the Online Guide

View a print version of the Guide