Given the rapid development of new genetic technologies, discrimination on the basis of genetic information is a problem that threatens to grow exponentially. Tests are currently only available for approximately 1300 genes—genes that are associated with relatively rare conditions. However, that small number will soon reach the thousands. These new tests will allow for the identification of genetic predispositions and susceptibilities to many common health conditions.
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 each of us.
GINA: A Victory for us All
President Bush signed the Genetic Information Nondiscrimination Act (GINA) into law on May 21, 2008. We continue to celebrate this monumental event as the culmination of thirteen 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.
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, will take effect 12 months after the date of signing, on May 21, 2009. The protections in employment, Title II, will take effect 18 months after the date of signing, on November 21, 2009. All individuals residing within the 50 States and US territories benefit from these protections.
What does GINA Mean?
A Guide to the Genetic Information Nondiscrimination Act
NEW! View a print version of this resource!
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 either as a resource for answering questions or as a flexible tool to adapt and customize within your community.
Related Federal Legislation
- Genetic Information Nondiscrimination Act (H.R.493, S.358)
This legislation would prohibit discrimination on the basis of genetic information with respect to health insurance and employment. GINA provides strong, enforceable protections against the misuse of genetic information—the definition of which includes family health history—in both health insurance coverage and employment decisions.
Additional Resources and Information
To learn more about existing protections against discrimination in health insurance and employment, use the following resources:
General 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.
Health Insurance Related Resources
- The U.S. Department of Health and Human Services offers information about current health privacy protections.
- Georgetown University's Consumer Coalition for Health Privacy site 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.
Employment Related Resources
- Visit the Genetics and Employment page at the National Conference of State Legislatures site.
- The Americans with Disabilities Act (ADA) has general information on discrimination issues.
- The U.S. Equal Employment Opportunity Commission (EEOC) offers general information about issues related to genetic discrimination.
