Federal Government Sites on Genetic Research & Policy
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CDC Genomics & Your Health
Includes pages on Genetic Counseling, Epigenetics, health and Disease, Pharmacogenetics & more. -
EEOC, Genetic Information Discrimination
The EEOC enforces Title II of GINA (dealing with genetic discrimination in employment). -
National Bioethics Advisory Commission archives
Commission's charter expired in 2001. Materials are hosted by the Bioethics Research Library at Georgetown University. -
National Human Genome Research Institute, Issues in Genetics
Includes sections on genetic discrimination, intellectual property, and privacy. The Genome Statute and Legislation Database enables searching of genetic topics in state statutes and bills introduced since 2007. -
National Human Genome Research Institution ELSI Research Program
Established in 1990 to foster basic and applied research on the ethical, legal and social implications of genetic and genomic research for individuals, families and communities.
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Biosafety & Biosecurity Policy
NIH page highlighting the development and implementation of policies that promote the responsible conduct and oversight of life sciences research.
United Nations
Professional Associations & Advocacy Groups
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American Board of Medical Geneticists & Genomics
Information about medical genetics training programs and certification for geneticists. -
American College of Medical Genetics and Genomics (ACMG)
An "organization composed of biochemical, clinical, cytogenetic, medical and molecular geneticists, genetic counselors and other health care professionals committed to the practice of medical genetics." Site includes list of policy statements, advocacy page. -
American Indian & Alaska Native Genetics Resource Center [NCAI]
An archive of a project from the National Congress of American Indians Policy Research Center. -
American Medical Association Resource Page on Genetics & Personalized Medicine
Discover more about genetics and personalized medicine and find tools and resources on genetics and taking an accurate family history. -
American Society of Human Genetics
"the primary professional membership organization for human genetics specialists worldwide." -
Center for Genetics and Society
" a nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of human genetic and reproductive technologies and other emerging technologies." -
European Society of Human Genetics
Promotes "research in basic and applied human and medical genetics, to ensure high standards in clinical practice and to facilitate contacts between all persons who share these aims, particularly those working in Europe." -
Genetic Alliance
"the world's largest nonprofit health advocacy organization network. Genetic Alliance's network includes more than 1,200 disease-specific advocacy organizations, as well as thousands of universities, private companies, government agencies, and public policy organizations." -
Genetic Literacy Project
"a non-profit organization funded by grants from non-partisan foundations" with "the goal ... to promote public awareness of genetics and science literacy." External Resources & Links page links to hundreds of sites, with a variety of perspectives. Free daily e-newsletter. -
Genetics Society of America
"The Genetics Society of America (GSA), founded in 1931, is the professional membership organization for scientific researchers and educators in the field of genetics. Our members work to advance knowledge in the basic mechanisms of inheritance, from the molecular to the population level." -
HUGO (Human Genome Organisation)
The "international organisation of scientists involved in human genetics." -
National Society of Genetic Counselors
Promotes "professional interests of genetic counselors and provides a network for professional communications." -
The Non-GMO Project
The Non-GMO Project is a mission-driven nonprofit organization dedicated to building and protecting a non-GMO food supply. We do this through consumer education and outreach programs; marketing support provided to Non-GMO Project Verified brands; and training resources and merchandising materials provided to retailers.
Organizations Concerned with Particular Diseases or Conditions
Many organizations concerned with particular conditions or diseases are involved in advocacy. Their websites include reports, policy statements, and information about current concerns.
For instance, if you visit the website of the Cystic Fibrosis Foundation, you'll see a menu for ways to "Take Action" that includes "Become an Advocate." Clicking around, you can get to the organization's policy agenda, a description of current initiatives, an article about the organization's advocacy achievements, and a page linking to briefings, testimonies and regulatory comments.
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American Cancer Society - Genetics & Cancer
"Some types of cancer run in certain families, but most cancers are not clearly linked to the genes we inherit from our parents. Gene changes that start in a single cell over the course of a person's life cause most cancers. In this section you can learn more about the complex links between genes and cancer." -
Cancer.net - Genetics [American Society of Clinical Oncology]Pages on The Genetics of Cancer; Collecting Your Family's Cancer History; Hereditary Cancer-Related Syndromes; Genetic Testing for Cancer Risk; What to Expect When Meeting with a Genetic Counselor
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Cystic Fibrosis Foundation
The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with the disease the opportunity to lead full, productive lives by funding research and drug development, promoting individualized treatment, and ensuring access to high-quality, specialized care. -
FORCE [Facing Hereditary Cancer EMPOWERED]
"FORCE improves the lives of the millions of individuals and families facing hereditary breast, ovarian, pancreatic, prostate, colorectal and endometrial cancers. Our community includes people with a BRCA, ATM, PALB2, CHEK2, PTEN or other inherited gene mutation and those diagnosed with Lynch syndrome. We accomplish this through our education, support, advocacy and research efforts." -
Huntington's Disease Society of America
HDSA's network of chapters, affiliates, HDSA Centers of Excellence, social workers and support groups provides a seamless connection for help, education and outreach to HD families and health care professionals across the United States. -
Little People of America
A "nonprofit organization that provides support and information to people of short stature and their families." -
March of Dimes
"The mission of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth and infant mortality." -
National Tay-Sachs & Allied Diseases Association
"National Tay-Sachs & Allied Diseases Association (NTSAD) is one of the oldest patient advocacy groups in the country. We focus on funding research, supporting over 500 families and individuals worldwide, and raising awareness to prevent disease." -
National Organization for Rare Disorders
A "patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them."
Universities & Research Centers
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GTR: Genetic Testing Registry [hosted by NIH]"The Genetic Testing Registry (GTR®) provides a central location for voluntary submission of genetic test information by providers. The scope includes the test's purpose, methodology, validity, evidence of the test's usefulness, and laboratory contacts and credentials. The overarching goal of the GTR is to advance the public health and research into the genetic basis of health and disease."
