Table of Contents

Web Sites
Additional Resources

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.

Ask the Geneticist
Genetics experts at Emory University and the University of Alabama at Birmingham answer online questions. The site provides fact sheets, links to resources, a description of what genetics services are and how to locate them, and advice on finding research studies. A searchable archive of previous questions and their answers is also provided.

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.

Genetic Disorders & Birth Defects Information Center
Offers an annotated, online guide to Web sites, publications, and other resources about genetic disorders, birth defects, genetic testing, and counseling, Also links to resources that cover the basics of genetics, including ethics, gene therapy, and career possibilities.

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.

March of Dimes Pregnancy & Newborn Health Education Center
Provides information for consumers on newborn screening, genetic counseling, and birth defects and genetic conditions. For health professionals, the March of Dimes provides a continuing education resource called Genetics and Your Practice as well as other resources.

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, Genetics Information and Services
Provides genetics information, and offers links to resources on genetic testing and newborn screening services and information, genetic counseling, and a variety of policy- and ethics-related issues.

National Newborn Screening and Genetics Resource Center
Provides downloadable brochures on newborn screening and specific diseases in several languages, a guide to regional genetic and newborn screening collaboratives as well as state-specific contact information; and the National Newborn Screening Information System, which serves as an information-collection and reporting system for capturing state and territorial newborn screening information.

National Office of Public Health Genomics
Provides information for consumers and professionals on family health histories, specific conditions, online training, and research, with links to numerous additional resources.

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.

Office of Rare Diseases (ORD)
Includes information about more than 6,000 rare diseases, research and clinical trials, patient support groups, and other resources.

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.

Regional Genetic and Newborn Screening Collaborative Groups
Provides a map of the seven Regional Genetics Collaboratives with links to their individual Web sites. This map is provided by the National Coordinating Center for these groups.

U.S. Surgeon General’s Family History Initiative
Encourages all Americans to learn more about their family health history, with a Web- or paper-based Family Health Portrait tool.

Additional Resources

• Genetic services (Children and adolescents with special health care needs knowledge path)
• Genetics (Community services locator)
• Genetics (Preconception and prenatal care knowledge path)
• Genetics organizations
• Newborn screening bibliography

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 Library Advanced Search.