Executive Committee
Sharon F. Terry, Chair,
Genetic Alliance
Cynthia Pellegrini,
American Academy of Pediatrics
Derek Scholes, American Heart Association
Joann Boughman,
American Society of Human Genetics
Timothy Leshan,
Brown University
Marla Gilson,
Hadassah
Barbara Harrison,
National Society of Genetic Counselors
Jeremy Gruber,
National Workrights Institute
Dan Lara,
PKD Foundation
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What does GINA Mean? A Guide to the Genetic Information Nondiscrimination Act
This tool provides a functional outline of GINA's protections to help clarify how the legislation impacts individuals and families. The resource includes:
* a history of the legislation,
* hypothetical situations of genetic discrimination, and
* key examples and definitions.
The Coalition for Genetic Fairness encourages individuals to utilize the guide to answer general questions. Organizations are welcome to put the guide on their website, link to it, or adapt and customize it for your community.
This guide is intended to promote dialogue and discussion about GINA and does not include detailed analysis of the legislation. Additional information about GINA's implementation and impact will be clarified as the regulations for GINA's enforcement are drafted. This process has begun. For example, a Request for Information (RFI) has been issued to solicit comments from the public. More information can be found
here.
GINA: An Overview
The History of GINA
How Does GINA Impact ME?
Health Insurance
* Protections in GINA
* What about submitting claims to my health insurance company?
* What does GINA NOT do?
Employment
* Protections in GINA
* Under what circumstances can an employer, employment agency, labor organization, or training program have access to my genetic information?
* What efforts must be made to ensure my information is kept confidential?
* What does GINA NOT do?
Examples of Genetic Discrimination
For Health Insurers
For Employers
For Clinicians and Healthcare Providers
For Researchers
For States
What's Next?
Helpful Definitions
Additional Resources
Do you have a question about GINA that was not answered by this resource? Send your question to Andria Cornell, Public Policy Program Assistant, at acornell@geneticalliance.org.
Last Updated: November 10, 2008
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