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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,

Barbara Harrison,
National Society of Genetic Counselors

Jeremy Gruber,
National Workrights Institute

September 9, 2008
Contact: Sharon Terry
202-966-5557 x201

Guide Launched to Prepare Americans for Newly Passed Health Legislation
Coalition for Genetic Fairness Unveils Genetic Information Nondiscrimination Act Resource

WASHINGTON, D.C. – September 9, 2008 – The Coalition for Genetic Fairness today announced the launch of an interactive, online guide to the landmark Genetic Information Nondiscrimination Act (GINA). The resource, “What Does GINA Mean? A Guide to the Genetic Information Nondiscrimination Act”, summarizes the protections of the first civil rights legislation passed in the new millennium and outlines its impact on the future of health in America.

Fully effective November 2009, GINA is the first and only federal legislation that will provide protections against discrimination based on an individual’s genetic information in health insurance coverage and employment settings. However, many outside the genetics community remain uniformed and unaware of GINA’s passing and its implications.

“The guide is the first of many educational resources the genetics community will create to increase GINA awareness,” said Sharon Terry, president of the Coalition and chief executive officer of Genetic Alliance. “We encourage individuals and organizations to use the resource to ask and answer questions about genetic discrimination, then adapt it within their community to improve early detection and avoidance of health threats.”

Access the guide at http://www.geneticfairness.org/ginaresource.html to learn about the history of the legislation, hypothetical situations of genetic discrimination, and key examples and definitions. The guide includes information for: the general public, clinicians and healthcare providers, employers, health insurers, researchers, and state officials.

“This interactive guide provides an opportunity for Americans to understand our new rights in a range of practical situations,” added Jeremy Gruber, legal director for the National Workrights Institute and longtime member of the Executive Committee of the Coalition for Genetic Fairness. “It is designed as a forum to spark discussions that will identify and eliminate barriers to transforming proactive health management through genetics. Our goal is for all users to update and enhance the resource; because of our collective contribution the tool will become more fluid and useful over time.”

The Coalition for Genetic Fairness will continue to work alongside other leaders in the genetics community to raise awareness about genetic discrimination and support pending regulations to protect and enforce the rights GINA affords.


The Coalition for Genetic Fairness is an alliance of advocacy organizations, health professionals, and industry leaders working to educate Congressional policymakers about the importance of legal protections for genetic information and ensure passage of meaningful genetic information nondiscrimination legislation.

The Coalition for Genetic Fairness is led by: Genetic Alliance, Affymetrix, American Academy of Pediatrics, American Society of Human Genetics (www.ashg.org), Brown University, Hadassah, National Society of Genetic Counselors, and the National Workrights Institute.

Coalition for Genetic Fairness · http://www.geneticfairness.org · 4301 Connecticut Ave. NW #404, Washington DC · 20008-2369 · Phone: 202.966.5557 · Fax: 202.966.8553