The benefits of integrating genetic information into health management are tremendous and include enabling an individual to make proactive and informed decisions. Knowledge about one’s genes can be invaluable to healthcare delivery. However, that knowledge is also susceptible to misuse. Because no one is exempt from this harm—each of us carries a number of mutated genes—genetic discrimination and its related privacy concerns should be profoundly important to all of us.
GINA: A Victory for Us All
The Genetic Information Nondiscrimination Act of 2008 was signed into law by President George W. Bush on May 21, 2008. GINA prohibits discrimination on the basis of genetic information with respect to health insurance and employment. It was passed to establish basic legal protections that will enable and encourage individuals to take advantage of genetic screening, counseling, testing, and new therapies that will result from scientific advances in the field of genetics. It also prevents health insurers from denying coverage or adjusting premiums based on an individual’s predisposition to a genetic condition and prohibits employers from discriminating on the basis of predictive genetic information.
As the first major civil rights bill of the new century, GINA provides individuals with federal protections against genetic discrimination in health insurance and employment. The health insurance provisions of the bill, Title I, took effect on May 21, 2009. The protections in employment, Title II, took effect on November 21, 2009. All individuals residing within all 50 states and U.S. territories benefit from these protections. Genetic Alliance continues to celebrate this monumental event as the culmination of 13 years of dedication and perseverance from the entire genetics community, led by the Coalition for Genetic Fairness, and more than 500 Congressional offices on Capitol Hill.
June 3, 2010: Genetic Alliance, the Genetics and Public Policy Center at Johns Hopkins University, and the National Coalition for Health Professional Education in Genetics announced the release of educational materials about the Genetic Information Nondiscrimination Act (GINA). View the press release announcing the materials.
Genetic Alliance crafted the public-oriented materials: an interactive website, www.GINAHelp.org; a “GINA & You” information sheet; and a slide set for advocacy organizations. All materials are available at http://www.GINAHelp.org and in Genetic Alliance's Resource Repository.
The National Coalition for Health Professional Education in Genetics (NCHPEG) developed the materials for healthcare providers, including background documents, a discussion guide suggesting how and when to talk about GINA with patients, a teaching slide set, and case studies that describe how the law works in a variety of real-world clinical settings. These materials are available on the NCHPEG website, http://www.nchpeg.org.
All materials are also available on the Genetics and Public Policy Center website.
View a Legislative History of GINA.
This tool provides a functional outline of GINA’s protections and how the legislation impacts every individual in the nation. The resource includes a history of the legislation, hypothetical situations of genetic discrimination, and key examples and definitions. We encourage individuals and organizations to utilize the guide as either a resource for answering questions or a flexible tool to adapt and customize within your community.
Additional Resources and Information
To learn more about existing protections against discrimination in health insurance and employment, use the following resources:
- Learn About the Coalition for Genetic Fairness, a partnership of consumers, industry members, advocates, and health professionals dedicated to eliminating genetic discrimination.
- Read the National Human Genome Research Institute’s (NHGRI) page on privacy and discrimination in genetics.
- The Genetics and Public Policy Center has an online GINA resource that contains detailed analyses of GINA, as well as FAQs and publications of interest.
- The Genetics and Rare Diseases Information Center recently created a useful GINA fact sheet.
- View the text of the Genetic Information Nondiscrimination Act of 2008 [Public Law 110-233, H.R. 493, S. 358].
- For healthcare provider resources on GINA, please visit http://www.nchpeg.org.
Health Insurance-Related Resources
- The U.S. Department of Health and Human Services offers information about current health privacy protections.
- The Center for Democracy & Technology has breakdowns of federal and state health privacy laws, and you can learn about ways to protect your health privacy.
- Visit the Genetics and Health Insurance page at the National Conference of State Legislatures site.