www.geneticfairness.org

The Coalition for Genetic Fairness was founded in 1997 to address the growing concern surrounding the misuse of genetic information in health insurance and employment decisions. The founding organizations included the Alpha-1 Association, Genetic Alliance, Hadassah, National Partnership for Women & Families, National Society of Genetic Counselors, and the National Workrights Institute. The Coalition’s objective was to educate the public and Congress about genetic discrimination so introduced genetic nondiscrimination legislation could be seriously considered. Initially, the Coalition consisted of civil rights, disease-specific, and healthcare organizations, but in 2005 the CGF expanded to include industry groups and employers. From its founding through the signing of the Genetic Information Nondiscrimination Act into law on May 21, 2008, the CGF united more than 500 hundred organizations and thousands of individuals as one voice against genetic discrimination.

With GINA’s passage, the Coalition for Genetic Fairness brought together the health community to play a crucial role in the drafting of the regulations for GINA’s enforcement, which began in October, 2008. The Coalition educates the public and raises awareness of the legislation, what it means, and how it impacts not only health insurance and employment, but healthcare delivery, research, and emerging technologies. The Coalition encourages dialogue and creates the space to share in the excitement for the future, voice concerns, and seek solutions to those concerns.

www.dnapolicy.org

The tremendous success of the Human Genome Project has laid the foundation for a true revolution in public health, promising improved diagnosis, more effective medicines, and individually-tailored healthcare. The Genetics and Public Policy Center was created in 2002 at Johns Hopkins University by Pew Charitable Trusts to help policymakers, the press, and the public understand and respond to the challenges and opportunities of genetic medicine and its potential to transform global public health.

In July 2008, the Genetics and Public Policy Center announced the launch of a new website dedicated to providing information about GINA to a variety of audiences, as well as updates on the pending regulations. The resource also includes a section-by-section review of the legislation’s language. View the new resource, titled “Project GINA,” here.

Furthermore, within Project GINA is a very useful FAQ section. View the Project GINA FAQ here.

www.ncsl.org

The National Conference of State Legislatures was founded in 1975 with the conviction that legislative service is one of democracy’s worthiest pursuits. NCSL is a bipartisan organization that serves the legislators and staffs of the nation’s 50 states, its commonwealths, and territories. NCSL provides research, technical assistance, and opportunities for policymakers to exchange ideas on the most pressing state issues. NCSL is an effective and respected advocate for the interests of state governments before Congress and federal agencies.

Included among the resources of the National Council of State Legislatures is a website outlining genetics laws and legislative activity. Individuals may choose a subject matter of interest and view a state-by-state chart of the genetics legislation in their state. Learn more here.

www.genome.gov

The National Human Genome Research Institute (NHGRI) led the National Institutes of Health’s (NIH) contribution to the International Human Genome Project, which had the sequencing of the human genome as its primary goal. This project was successfully completed in April 2003. Now, the NHGRI’s mission has expanded to encompass a broad range of studies aimed at understanding the structure and function of the human genome and its role in health and disease. To that end, NHGRI supports the development of resources and technology that will accelerate genome research and its application to human health. A critical part of the NHGRI mission continues to be the study of the ethical, legal, and social implications (ELSI) of genome research. NHGRI also supports the training of investigators and dissemination of genome information to the public and health professionals.

The NHGRI has a resource for information about genetic discrimination and GINA. View the resource here.

Faces of Genetic Discrimination: How Genetic Discrimination Affects Real People
National Partnership for Women and Families, on behalf of the Coalition for Genetic Fairness. July 2004.

The following is testimony from the fifth meeting of SACGHS, providing consumer perspectives on genetic discrimination: