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Genetics

Professional Resource Brief

Web Sites

Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children
Advises the Secretary of the U.S. Department of Health and Human Services on the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and standards for effectively reducing morbidity and mortality in newborns and children having, or at risk for, heritable disorders. Provides meeting presentations and minutes, reports on long-term follow-up and treatment in newborn screening, legislation, and brief educational materials for parents and children.

American College of Medical Genetics
Provides news releases, a statement on direct-to-consumer genetic testing, a 2008 publication Standards and Guidelines for Clinical Genetics Laboratories, policy statements, a Find a Geneticist search page, and information on careers.

American College of Obstetricians and Gynecologists (ACOG) Web treats: Genetics, Genomics, and the Human Genome Project
Links to Web sites, databases, and other resources that provide information on genetics, genomics, and the Human Genome Project.

American Society of Human Genetics
Provides professional resources related to education in genetics from grades K-12 through postdoctoral studies; career information; and links to information for consumers and for health providers.

Centers for Disease Control and Prevention: Family Health History
Encourages all Americans to learn more and collect informaion about their family health history . Explore topics and resources for families and health professionals. See also The U.S. Surgeon General's My Family Health History Initiative.

Centers for Disease Control and Prevention: Public Health Genomics at CDC
Provides information for consumers and professionals on family health histories, specific conditions, online training, and research, with links to numerous additional resources.

Genetic Alliance
Offers tools such as WikiGenetics and WikiAdvocacy, a family health history toolkit, a comprehensive manual for consumers and professionals called Understanding Genetics, databases with information on more than 1,000 genetic conditions, publications, and Webinars. Also has information on the Genetic Information Nondiscrimination Act of 2008.

Genetics and Public Policy Center
Provides information on genetic technologies and genetic policies for the public, media, and policy makers, focusing on reproductive genetics, genetic testing quality, public attitudes towards genetic issues, and genetic privacy and discrimination.

Genetics Home Reference
Provides consumer-friendly information about the effects of genetic variations on human health. Includes an A-to-Z guide to genetic disorders, descriptions of more than 450 related genes plus information on the 23 pairs of chromosomes, a genetics handbook (with links to online resources), and a glossary of medical and genetics definitions.

MedlinePlus® Health Topic on genetics (NLM)
Explore topics on genetics: conditions, therapies, disorders, testing, screening, reserarch, and more. Find consumer-friendly information about the effects of genetic variation on human health.

MedlinePlus® Health Topic on newborn screening (NLM)
This informational page for consumers from the National Library of Medicine provides information about newborn screening with links to resources on topics such as genetics, journal articles, organzations and resource centers, and realated health topics.

National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups
Links to the seven regional genetic and newborn screening collaborative groups funded by the U.S. Maternal and Child Health Bureau; to national, state, and federal resources; and to resources on telehealth, newborn screening, and birth defects. Also provides a calendar of upcoming meetings and Webcasts on training topics.

National Human Genome Research Institute
Provides educational resources for students, teachers, and the general public; information on policy and ethics; and research, training, and grants information. Collaborates with the Office of Rare Diseases to provide the Genetic and Rare Diseases Information Center (GARD) whose information specialists answer questions in English and Spanish from clients and their families, health professionals, and biomedical researchers. GARD also provides a searchable database on numerous conditions.

National Institutes of Health, Office of Rare Diseases Research
Provides information for health professionals and consumers on rare diseases, orphan products, research and clinical trials, scientific conferences, and other topics.

Newborn Screening Information Center
From the Health Resources & Services Administration (HRSA), find information and topics on Newborn Screening including information about health conditions the newborn screening process can identify and finding information about newborn screening in your state.

National Society of Genetic Counselors
Provides a directory of genetic counselors, facts about genetic counseling, an extensive list of recommended books, information on creating a family history, and training and resources for genetic counselors.

OMIM™ Online Mendelian Inheritance in Man™
Comprises an online catalog of textual information and references about human genes and genetic disorders. Also offers links to the National Center for Biotechnology Information (NCBI) Entrez database of MEDLINE articles and sequence information.

U.S. Surgeon General My Family Health History Initiative
Encourages all Americans to learn more about their family health history, using a Web-based tool: My Family Health Portrait.


Additional Resources

For more information on genetics in general and on specific genetics topics such as individual genetic disorders (e.g., sickle cell disease, Down syndrome), use the MCH Digital Library Advanced Search.

Authors: Olivia K. Pickett, M.A., M.L.S.; Beth DeFrancis Sun, M.L.S., MCH Digital Library
October 2009. Updated September 2012; May 2024.

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.