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The following list of resources is neither exhaustive nor comprehensive. The featured resources are used most often in GEPN offerings or have proven to be valuable resources in clinical settings or have been recently developed to help nurses achieve essential competencies in genetics and genomics. The listed resources are also regularly updated by highly reputable organizations. Like all internet resources, when servers are changed or updated, URLs also change. Therefore, the integrity of the links is not guaranteed, despite regular checks and updates by GEPN staff.
Cancer Genetics – The National Cancer Institute provides expert reviewed information about the genetics of various types of cancer. Risk assessment tools for various types of cancer can also be found at this site.
Genetics / Genomics article series for health professionals:
GeneTests This publicly funded site has four main sections: 1) GeneReviews which provides comprehensive, expert-authored, peer-reviewed descriptions of over 500 genetic conditions; 2) international directory of clinical and research genetic testing laboratories; 3) searchable directory of clinics providing genetics services; and 4) educational materials, including an illustrated glossary of over 200 medical genetics terms.
Genetics Home Reference – National Library of Medicine produced this site to provide consumer-friendly information about the effects of genetic variations on human health. An illustrated handbook provides basic information about genetics. Other sections of the site provide succinct overviews of over 800 genes and the genetics of over 500 conditions. A glossary and links to other resources are also available.
My Family Health Portrait “is the Web-based tool from NHGRI and the U.S. Surgeon General’s Family History Initiative that helps you create your own family health history.”
National Human Genome Research Institute – Besides providing information about intramural and extramural research, the site provides: educational materials about genetics and genomics; information and links about policy, legal and ethical issues in genetics research; and information about genetics and genomics for patients as well as for health professionals.
National Newborn Screening and Genetics Resource Center- provides “information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.”
Public Health Genomics – This Centers for Disease Control and Prevention website serves as “a credible source for information on the appropriate role and importance of genomics in disease prevention and health promotion” An often cited favorite resource is the Genomics & Health Weekly Update
Talking Glossary of Genetic Terms – “The National Human Genome Research Institute (NHGRI) created the Talking Glossary of Genetic Terms to help everyone understand the terms and concepts used in genetic research. In addition to definitions, specialists in the field of genetics share their descriptions of terms, and many terms include images, animation and links to related terms.”
Genetics / Genomics Competencies Center – Portal to many genetics / genomics educational and instructional resources that are organized by genetics / genomics competencies.
Telling Stories: Understanding Real Life Genetics – Stories that highlight the impact of genetics on real life and its relevance to healthcare practice. Stories feature a range of genetic conditions including single-gene disorders, chromosomal abnormalities and multifactorial conditions.
Visible Human Project
International Society of Nurses in Genetics (ISONG)
American College of Medical Genetics
American Society of Human Genetics
National Coalition for Health Professional Education in Genetics (NCHPEG)
National Society of Genetic Counselors
Coalition for Genetic Fairness - Genetic Information Nondiscrimination Act
March of Dimes
National Organization of Rare Disorders (NORD)
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