Genomics Resources

AAFP Policies and Resources

Breast Cancer

Breast Cancer/BRCA Mutation Testing

Familydoctor.org

Hemochromatosis

Hemoglobinopathies

Ovarian Cancer

Ovarian Cancer/BRCA Mutation

Phenylketonuria

Sickle Cell Disease

Thyroid Function Abnormalities

Resources from Other Organizations

Accreditation Council for Graduate Medical Education (ACGME) -- Accreditation Council for Graduate Medical Education (ACGME) - Family Medicine Program Requirements: ACGME accredits medical education residency programs with the goal of improving healthcare by advancing education. This link provides information on their program requirements for family medicine.

Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) -- This group advises the Secretary of Health and Human Services on newborn screening and other interventions regarding best care for newborns. It includes information regarding the committee's charge, meetings, how to nominate a condition for review, reports and correspondence, and newborn screening educational materials for parents, children, and physicians.

American College of Medical Genetics (ACMG) -- American College of Medical Genetics (ACMG): This site provides education, resources, and support for professionals in the field of medical genetics. It also includes the ACT (ACTion) sheets and algorithms that provide guidance to physicians who are faced with a positive newborn screening test.

American Health Information Community (AHIC) Personalized Healthcare Workgroup (PHC WG) -- This is a federal advisory group that makes recommendations regarding health information technology. It provides information regarding the formation of the workgroup, its charge, members and meetings.

Collaboration, Education and Test Translation Program (CETT) -- This site provides information on tests for rare genetic diseases. Their goal is to provide consumers with the best information regarding as many new genetic tests as possible and to ensure that the test meets the needs of the public.

Evaluation of Genomic Applications in Practice and Prevention (EGAPP) -- This began in 2004 as a systematic way to evaluate genetic tests and genomic applications. This site has information regarding the EGAPP project, its committees and workgroup, including process for identifying topics for review, methods of review, and developing evidence reports and recommendation statements.

GeneTests -- This is a source of detailed reviews on genetic disorders with an easy search strategy. In addition, the database offers links to genetic tests and the laboratories that offer them as well as a way to search for genetics clinics by geographic location. Because of regular updating, this resource is current.

Genetic Alliance -- The goal of the Genetic Alliance is to transform health through the use of genetics. This site provides information on many different aspects of genetics relevant for health care providers as well as consumers.

Genetic and Rare Diseases Information Center (GARD) -- This is a site from the Office of Rare Diseases (ORD) and the National Human Genome Research Institute (NHGRI) to help people find information about genetic diseases and rare conditions.

Genetics Home Reference -- This site provides information for consumers on the effects of genetic variations on health.

Genetic Tools -- This site provides information to aid in teaching genetics in primary care settings. It provides background information, teaching cases, and links to other resources.

March of Dimes: Genetics and Your Practice -- Free access for health care professionals to information and tools to assist them with integrating genetics into their practices, including content specific to individual practices, and free CME.

National Coalition for Health Professional Education in Genetics (NCHPEG) -- This organization of organizations was established by the American Medical Association, the American Nurses' Association and the Human Genome Research Institute. The mission of NCHPEG is to promote health professional education and access to information about advances in human genetics to improve health care of the nation.

National Coordinating Center for Genetics and Newborn Screening Regional Collaborative Groups (NCCRCG) -- This group was started as a way to improve the health of children and families through genetics translation research. It provides information regarding the Center's advisory committee and seven regional collaborative groups and their work, links to resource partners and other related resources.

National Guideline Clearinghouse (NGC) -- This site is a searchable database available to the public with information on evidence-based clinical practice guidelines.

National Human Genome Research Institute (NHGRI) -- This institute, which led the project responsible for completing the human genome sequence, is now using this information to improve human health and to fight disease. This site includes information regarding genome sequencing, clinical research, ethical, legal and social implications research and the Office of Population Genomics.

National Newborn Screening and Genetics Resource Center -- Information regarding newborn screening and genetics and links to related information.

National Office of Public Health Genomics, Centers for Disease Control and Prevention -- Information regarding human genetic discoveries, their use in disease prevention and health improvement, and links to related resources.

National Society of Genetic Counselors -- Information regarding genetic counseling centers for patient referrals, careers, education, professional societies, and meetings.

Online Mendelian Inheritance in Man (OMIM) -- This site provides a comprehensive inventory of information on all known mendelian disorders and over 12,000 genes.

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Secretary's Advisory Committee on Genetics, Health and Society (SACGHS) -- This committee was started to provide an organized way for the federal government to address illnesses related to human genomics and genetics. It includes information regarding the committee's charter, reports and correspondence, meetings and links to related federal, national and international websites.

U. S. Food and Drug Administration (FDA) Genomics Information -- An overview of genomics activities at the FDA, including information about data submission, the Interdisciplinary Pharmacogenomic Review Group, drug development and interactions, publications by FDA staff, presentations and links to related sites.

U. S. Surgeon General's Family History Initiative -- A web-based tool to record and organize family health information that may be shared with family members and health care providers.

Genomics Related Legislation

Federal and State Legislation -- Database of federal and state laws/statutes and federal materials on topics that include privacy of genetics information, genetic testing and counseling, commercial use of genetic information and related patents.

Genetic Information Non-Discrimination Act (GINA) -- This site provides information on GINA, the law that protects Americans from discrimination due to their genetic information in healthcare and employment.

National Human Genome Research Institute (NHGRI): Policy Recommendations for Genetic Discrimination in Insurance or Employment -- This site will take you to the federal recommendations regarding genetic discrimination in healthcare and the workplace.

State Legislation -- Database of genetics-related legislation and legislation being considered by states.