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: 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.
GeneEd: Genetics, Education, Discovery
Offers resources for teachers and students in grades 9-12 on genetics topics including cell biology, DNA, genes, chromosomes, heredity and inheritance patterns, inheritance and the environment, genetic conditions, evolution, biostatistics, biotechnology, DNA forensics, and top issues in genetics.
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.
Genetics in Primary Care Institute
Provides webinars for primary care clinicians and other stakeholders on incorporating genetic medicine into primary care.
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 Research
Provides information for health professionals and consumers on rare diseases, orphan products, research and clinical trials, scientific conferences, and other topics.
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 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.
Partners in Information Access for the Public Health Workforce: Public Health Genomics
Provides links to associations and organizations; data and statistics; grants and funding; legislation and policy; literature and reports; genomics promotion, education, and information; and conferences and meetings.
U.S. Surgeon General Family Health History Initiative
Encourages all Americans to learn more about their
family health history, with a Web- or paper-based Family
Health Portrait tool.
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.
Authors: Olivia K. Pickett, M.A., M.L.S., Beth DeFrancis
Sun, MCH Library
October 2009. Updated September 2012
These resources are provided to address language barrier issues.
TRANSLATION DISCLAIMER: Automatic translations provide the sense of a translated document, but they are not as reliable as translations by a trained professional. Therefore, any automatic translations should be used with caution.
