Genetic Information Nondiscrimination Act  (GINA)
The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a new Federal law that makes it illegal for health insurers or employers to discriminate against individuals based on their genetic information.  President Bush signed GINA into law on May 21, 2008.  All provisions of the law have been in effect since November 21, 2009.
An interactive, online guide to the Genetic Information Nondiscrimination Act (GINA) was produced by the Coalition for Genetic Fairness. The resource, “What Does GINA Mean? A Guide to the Genetic Information Nondiscrimination Act” (PDF 209KB) summarizes the protections of the first civil rights legislation passed in the new millennium and outlines its projected impact on the future of health in America.
The Genetics and Public Policy Center at Johns Hopkins University, the National Coalition for Health Professional Education and Genetic Alliance have produced a series of educational materials about GINA for both the public and health-care providers.
DPH Genomics Office has developed a document that compares Connecticut's genetic privacy laws to the protections and limitations found in GINA.
With the passage of the 2010 health care reform legislation, the Congressional Research Service has developed a report on “The Genetic Information Act of 2008 and the Patient Protection and Affordable Care Act of 2010:  Overview and Legal Analysis of Potential Interactions.


Genetics Information

  • Biointeractive, produced by the Howard Hughes Medical Institute, this site provides a variety of resources, including lectures and animations, about the genetics, DNA, gene regulation, the genetic basis of disease, and genomics.

  • DNA from the beginning, a multimedia introduction to genetics produced by the DNA Learning Center at Cold Spring Harbor USA.

  • GAPPNet™, Archived website for the Genomic Applications in Practice and Prevention Network, which provided a central location to learn about developments in research, policies, and programs on the use of genomic applications to improve health and prevent disease, such as the GAPP Knowledge Base, and Evidence for Genomic Applications (EGA) an online journal.

  • Genetics Home Reference - a service of the National Library of Medicine.  Provides brief, lay-language summaries of genetic conditions and related genes and chromosomes.

  • Genomic Medicine An Updated Primer

  • Learn.Genetics - An excellent site provided by the University of Utah's Genetic Science Learning Center. Includes interactive tutorials on basic genetics, genetic disorders, and genetics in society,=.

  • National Cancer Institute - Genetic Testing for Hereditary Cancer Syndromes

  • National Office of Public Health Genomics - US Centers for Disease Control and Prevention, Office of Genomics and Disease Prevention

  • March of  Dimes genetics fact sheets contain information about rare and common genetic diseases

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Genomics and the Community

  • Communities of Color and Genetics Policy Project - This project is designed to engage African American and Latino communities in dialogue about genetics, values, and public policy.

  • Howard University National Genome Center - This group seeks to incorporate the unique as well as the shared experiences of African Americans and other African Diaspora populations into the implementation and application of human genome research, endeavoring to minimize potential harm and maximize capacity of these groups to partake of the expected benefits of improved diagnosis, treatment, and prevention of disease.

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Human Genome Project

  • US Department of Energy:  Human Genome Project Information - The US Dept of Energy was the founder of the Human Genome Project and provides basic information about the Project as well as other genomic-related issues.

  • US National Human Genome Research Institute - The National Human Genome Research Institute (NHGRI) led the National Institutes of Health's (NIH) contribution to the International Human Genome Project, which had as its primary goal the sequencing of the human genome. 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.

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Information Sheets/ Hojas Informativas

Hereditary Breast and Ovarian Cancer (HBOC)
Lynch Syndrome (LS)

Patient Information and Support Groups

  • Genetic Alliance is an international coalition composed of more than 600 advocacy, research and healthcare organizations that represent millions of individuals with genetic conditions and their interests.

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Public Health Genomics and Epidemiology

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Public Policy and Ethical, Legal, Social Implications (ELSI) of Human Genetics  

  • ELSI Research Program of the National Human Genome Research Institute that supports basic and applied research on the ethical, legal, and social implication of genetic and genomic research.

  • GeneForum, a US-based non-profit organization that "enables citizens to confront advancements in genetic research and technology, to understand the science behind them, and to address important ethical, legal, and social questions."

  • Genetics and Public Policy Center (part of the Berman Bioethics Center at Johns Hopkins University)

  • Genetics and Ethics: Site maintained by the Bioethics Research Library at Georgetown University with links to resources about the ethical, legal, and social implications of genetics research and genetic testing.

  • Secretary’s Advisory Committee on Genetics, Health, and Society Archives (SACGHS) was established to serve as a forum for deliberation on the ethical, legal and social issues at the intersection of genetics, health and society and to advise the Secretary of Health and Human Services about these issues. 

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