Do you have a resource you would like ISONG to review for possible inclusion in the table? Email info@isong.org.
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| DNA from the Beginning (opens in a new tab) | DNA from the Beginning sponsored by Cold Spring Harbor | An animated primer of 75 experiments which are the basis of modern Genetics | F | U & G |
| Genetics Generation (opens in a new tab) | University of San Diego | Knowledge center created by undergraduate students to improve public understanding of current genetic technologies and ethical questions they raise | F | U & G |
| Genome: Unlocking Life’s Code (opens in a new tab) | Smithsonian National Museum of Natural History and National Human Genome Research Institute | Resources and tools for an understanding of current topics in genomics, the technology driving advances in genetics and genomics in our lives and on our society | F | U |
| Help Me Understand Genetics (opens in a new tab) | U.S. National Library of Medicine (MedlinePlus) | Links to fundamental information about genetics created for the general public | F | U & G |
| Introduction to Genetics (opens in a new tab) | National Human Genome Research Institute | Basic information about genetics and terminology related to genetics | F | U & G |
| Jackson Lab Genome Education - Online Learning Jackson Lab Genome Education - High school and Undergraduate Jackson Lab Genetic Learning Resources (opens in a new tab) | The Jackson Laboratory | STEM resources for high school and undergraduate students. Features both animal and human genomic resources. Compilation of graduate and specialty training in genetics. Genetics learning resources and lesson plans. | F | U, G & R |
| Learn Genetics (opens in a new tab) | The University of Utah | Educational website that provides engaging, multimedia educational materials concerning a variety of topics including genetics. Excellent DNA to RNA transcription activity. | F | U & G |
| Linkage (opens in a new tab) | Sarah Dewell, Trina Walker, Noopur Swadas; Thompson River University | An online knowledge engagement hub which includes educational content about foundational genomic | F | U, G & R |
| Medline Plus Genetics (opens in a new tab) | U.S. National Library of Medicine/Medline Plus | Resources for consumer-friendly information about the effects of genetic variants on human health. Provides basic information about gene, chromosomes, and genetic conditions. | F | U & G |
| Online Genetics Education Resources (opens in a new tab) | National Human Genome Research Institute | This is a compilation of genetics education resources. It includes networking sites, documentary films, lectures, booklets, activities and programs. | F | U & G |
| StoryBots: "Why Do People Look Different?" (opens in a new tab) | Netflix / StoryBots | Animated episode introducing genetics basics (DNA, genes, inherited traits). Designed for children but useful as an accessible primer. The official full episode is on the Netflix Jr. YouTube channel; the series also streams on Netflix (subscription). | F | U |
| Talking Glossary (opens in a new tab) | National Human Genome Research Institute (NHGRI) | Features more than 250 common genetic terms pronounced and explained with images, animation and links to related terms. | F | U & G |
| Virtual Genetics Education Centre (opens in a new tab) | University of Leicester | Genetics teaching resources for teachers and learners in schools and higher education, health professionals and the general public simple experiments, suitable for all ages with tutorial material videos on useful techniques and links to other evaluated resources. | F | U & G |
| Your Genome (opens in a new tab) | Wellcome Connecting Science | Educational resources, including interactive video and games for high-school and undergraduate students related to genetics, health and society. | F | U & G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| Oncology Nursing Society Genomics and Precision Oncology Learning Library (opens in a new tab) | Oncology Nursing Society (ONS) | The Genomics and Precision Oncology Learning Library includes case studies, podcasts, mini-video series, a genomics taxonomy, and clinical practice resources to support the translation of genomic information to patients and families are continually added to the library. The resources are free but require registration. | F & C | U & G |
| FORCE – Facing Our Risk of Cancer Empowered (opens in a new tab) | FORCE (Facing Our Risk of Cancer Empowered) | Resource to improve the lives of individuals and families facing hereditary cancer. | F | U & G |
| Genetics Toolkit (opens in a new tab) | Society of Gynecologic Oncology | The toolkit is comprised of case studies telling an individual’s story related to gynecologic cancer, including references, national guidelines and society statements. | F | U & G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| Clinical Education at JAX (opens in a new tab) | The Jackson Laboratory | Library of free online courses on genetic/genomic healthcare with CE Credits. Site also has rich resources regarding personal Medicine. | F | U & G |
| ClinGen (opens in a new tab) | NIH-National Library of Medicine | NIH-funded resource dedicated to building a central resource that defines the clinical relevance of genes and variants for use in precision medicine and research. | F | G |
| G3C (Global Genetics and Genomics Community) (opens in a new tab) | Global Genetics and Genomics Community (G3C) | Repository of genomic health-care simulations; unfolding case studies and links to additional resources for a basic introduction to genetics. | F | G |
| Gene Review (opens in a new tab) | NCBI Bookshelf | International point-of-care resources for inherited conditions in standardized journal-style format, covering diagnosis, management, and genetic counseling for patients and their families. | F | U & G |
| Genetics Education Canada Knowledge Organization (opens in a new tab) | Children's Hospital of Eastern Ontario Department of Genetics | Point of care and education resources covering diverse range topics from newborn screening to rare diseases. | F | U & G |
| Gen-Equip Project (opens in a new tab) | Partnership of Experts in Primary Care Genetics | A project that combines education, primary care, and genetics. This group aims to enable health professionals working in primary care to understanding and use genetics in practice. Includes online learning modules, webinars, practical tools, case studies and more. | F | U & G |
| Genomics Education Programme (opens in a new tab) | NHS Health Education England | Educational offerings for health professionals. Teaching resources and Genomics glossary. | F | U & G |
| Genomics Education Resource Center (GenomeEd) (opens in a new tab) | National Human Genome Research Institute | Collection of peer-reviewed genomics educational materials for genetic counselors, nurses, pharmacists, physician assistant and physicians. | F | U & G |
| Genomic Medicine for Health Care Professionals (opens in a new tab) | National Human Genome Research Institute (NHGRI) | Up-to-date genetics and genomics information related to patient management, curricular resources, National Institutes of Health and NHGRI research activities and ethical, legal and social issues. | F | U & G |
| Genomics & Precision Health Educational Resources (opens in a new tab) | Centers for Disease Control and Prevention | Links for general public educational resources for health care professionals such as case studies, newborn screening. Links for policy makers. Links for teachers. | F | U & G |
| GeNotes (opens in a new tab) | National Health Service-United Kingdom | ‘Just in time’ genetics educational resource for healthcare professionals, designed to be used in a clinical setting. | F | G |
| Health Centre for Genetics Education- Australia (opens in a new tab) | NSW Government (Government of New South Wales) | Links for resources for individuals and families. Links for resources for general practitioners and health professionals. Fact sheets and resources. | F | U & G |
| Johns Hopkins University School of Nursing (JHUSON): Genetics and Genomics in Nursing Resources (opens in a new tab) | Johns Hopkins University School of Nursing (JHUSON): | Foundational information about genetics and genomics to empower nurses to use genetics and genomics within their practice to improve patient care. | F | U |
| Method for Introducing a New Competency: Genomics (MINC) (opens in a new tab) | National Human Genome Research Institute (NHGRI) | A toolkit providing links to external resources and clinical exemplars for integrating genetics/genomics into healthcare systems, with interactive, evolving case studies to test genetic-nurse competencies. | F | U & G |
| Nursing Genomics FAQ (opens in a new tab) | Inter-Society Coordinating Committee for Practitioner Education in Genomics (ISCC-PEG) and National Human Genome Research Institute (NHGRI) | Resources that answer questions about how nurses integrate genetics into education and practice, designed for entry-level nurses, advanced practice nurses and nurse educators. | F | U & G |
| Online Mendelian Inheritance in Man® (opens in a new tab) | Online Mendelian Inheritance in Man® (OMIM) | An Online Catalog of Human Genes and Genetic Disorders | F | U & G |
| Resources on Hemolytic Anemias and PKD (opens in a new tab) | Agios | Agios disease-education resource on pyruvate kinase (PK) deficiency, a chronic, lifelong hereditary hemolytic anemia. Provides diagnostic guidance, information on disease complications (e.g., iron overload), and management considerations for clinicians. | F | U & G |
| Telling Stories, Understanding Real Life Genetics (opens in a new tab) | NHS Health Education England | Free education resource for nurses/midwives and their educators - >100 stories from individuals with or at risk of a genetic condition, family members and health professionals, linked to additional resources and activities to support teaching/learning. | F | U & G |
| University of Texas Health Adult Cardiovascular Genomics Certificate (opens in a new tab) | UT Health Science Center of Houston | Series of online educational modules about the genetics and genomics of adult onset cardiovascular diseases. Intended for healthcare providers who do not have specialized training in genetics. | F | G |
| Wellcome Connecting Science Hands-on Training Online Training (opens in a new tab) | Wellcome Genome Campus, UK | Genomics and biomedical training for research scientists, clinicians, and healthcare professionals. | F & C | G & R |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| The Genetic Counseling Cultural Competence Toolkit (opens in a new tab) | National Society of Genetic Counselors | An online resource portal to provide culturally and linguistically appropriate health care services. The website includes 9 extensive cases that have been approved for Category 1 CEUs for genetic counselors and as an interdisciplinary continuing education opportunity for nurses and other health disciplines. The cases can be completed for free without CEU credit. There is a fee for CEU credit. | F & C | U & G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| Genetic Information Non-discrimination Act of 2008 (opens in a new tab) | US Equal Employment Opportunity Commission | Copy of the actual GINA legislation | F | U & G |
| LawSeq (opens in a new tab) | University of Minnesota and Vanderbilt University Medical Center | Searchable database of United States federal and state law and legal cases relevant to genomics. | F | G |
| Genetics Policy Hub (opens in a new tab) | National Coordinating Center for the Regional Genetics Network (NCC) | The website includes resources related to genetics policy across the US, including information about Medicaid coverage of genetic services and policy statements from national organizations. | F | G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| FamGenix (opens in a new tab) | FamGenix | Pedigree drawing, family history, and risk assessment tools | F | U & G |
| Family Health History (opens in a new tab) | Center for Disease Control and Prevention | Resources and information about collecting family health history, including online tools | F | U & G |
| Pedigree Software (opens in a new tab) | Progeny | Free online pedigree certification software | F & C | U & G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| Biochemgen (UCSD Biochemical Genetics & Metabolomics Laboratory) (opens in a new tab) | University of California San Diego (UCSD) Biochemical Genetics and Metabolomics Laboratory | UCSD Department of Pediatrics clinical and research laboratory specializing in inherited metabolic disease; offers CLIA/CAP-certified biochemical-genetics and metabolomics diagnostic testing and metabolomics research assays. | F | G & R |
| Direct to Consumer Testing FAQ (opens in a new tab) | Inter-Society Coordinating Committee for Practitioner Education in Genomics (ISCC-PEG) and National Human Genome Research Institute (NHGRI) | This resource was designed for health professionals to provide information on the benefits and limitations of DTC genetic testing and how this affects patient care. | F | U & G |
| Genetic Testing Registry (opens in a new tab) | NIH National Center for Biotechnology Information (NCBI) | The Genetic Testing Registry (GTR®) provides a central location for voluntary submission of genetic test information by providers. The GTR® allows for searching by phenotype, test, gene or lab. | F | U & G |
| Guide to interpreting Genetic Reports: A Genomic Toolkit (opens in a new tab) | NHGRI, Practitioner Education Working Group of the Clinical Sequencing Exploratory Research (CSER) Consortium | Reference guide designed to help non-geneticist healthcare providers to understand genomic medicine and genome sequencing. This guide is intended for healthcare providers faced with understanding and interpreting their patients' genomic test reports. This guide is not intended to help select a test, but rather to help providers navigate test results. | F | G & R |
| MedlinePlus: Genetic Testing (opens in a new tab) | National Library of Medicine | Provides a Summary of Genetic testing including types, reasons performed; benefits and drawbacks and a list of additional resources. | F | U & G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| ACMG Act Sheets & Algorithms (opens in a new tab) | American College of Medical Genetics | Summary information sheets and algorithms for newborn and other genetic screening, family history, carrier, diagnostic, and secondary findings. | F | U & G |
| Baby’s First Test (opens in a new tab) | Baby's First Test | US resource center for newborn screening. Provides general information and condition-specific information about newborn screening, and state-specific regulatory information. Includes resources tab with educational materials. | F | U & G |
| Biochemical Genetics (opens in a new tab) | Seattle Children's Hospital | Resources for families of children with metabolic conditions, presented at an 8th-grade or lower reading level. | F | U & G |
| CDC Newborn Screening (opens in a new tab) | The Centers for Disease Control and Prevention (CDC) | Offers resources for families and public health professionals.Includes background on why newborn screening is important, details on screening for genetic and metabolic conditions, hearing loss, and critical congenital heart defects, plus outreach materials. | F | U & G |
| Heritable Disorders in Newborns and Children — Education and Training Work Group (opens in a new tab) | Health Resources & Services Administration (HRSA) | Communication guide to help nurses and APRNs frame the initial notification and discussion with parents about positive/abnormal/out-of-range newborn-screening results. | F | G |
| HRSA Newborn Screening (opens in a new tab) | Health Resources & Services Administration (HRSA) | Provides up-to-date information and resources about newborn screening. All newborn babies in the United States are screened for rare but serious health conditions. Screening helps identify babies with these conditions before they become sick. | F | U & G |
| NewSTEPs (opens in a new tab) | Association of Public Health Laboratories | A national newborn screening resource center designed to provide data, technical assistance and training to newborn screening programs and assist states with quality improvement initiatives. Provides information on Newborn Screening disorders, offers a resource library and data center. | F | U & G |
| Vademecum Metabolicum (Metabolic disorders) (opens in a new tab) | Johannes Zschocke & Georg F. HoffmannMetabolics GmbH, Friedrichsdorf, Germany | Quick reference with diagrams for inborn errors of metabolism. Phone app available. | F | G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| All of Us (opens in a new tab) | US National Institutes of Health | All of Us is building a diverse database that can inform thousands of studies on a variety of health conditions. Opportunities for patient participation, funding and researchers to be involved in genetic/genomic research. | F | U, G & R |
| Clinical Genetics Patient and Family Education Resources (opens in a new tab) | Seattle Children’s Hospital | Resources presented at an 8th grade reading level directed toward families of children with genetic conditions | F | U & G |
| Communication Guide for Heritable Disorders (opens in a new tab) | Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) | Communication guide for clinicians and providers to help frame the initial notification and discussion with parents about positive/abnormal/ out-of-range newborn screening results. | F | U & G |
| Cystic Fibrosis: Sam's story (opens in a new tab) | YouTube | Case study of individual with cystic fibrosis | F | U & G |
| Hemophilia and the Fencer: Luke's story today (opens in a new tab) | YouTube | Case study of Individual with hemophilia | F | U & G |
| Parent Education and Support – Genetics and Chromosomal conditions (opens in a new tab) | March of Dimes | Parent information about how and testing for genes and chromosomes that can sometimes change, causing serious health conditions and birth defects. | F | U & G |
| Resources on pyruvate kinase deficiency (opens in a new tab) | Agios | Resources on pyruvate kinase deficiency including diagnostic pathways, genetic testing, management, and patient education resources. | F | U & G |
| Telling Stories, Understanding Real Life Genetics (opens in a new tab) | NHS Health Education England | Free education resource for nurses/midwives and their educators - >100 stories from individuals with or at risk of a genetic condition, family members and health professionals, linked to additional resources and activities to support teaching/learning. | F | U & G |
| Undiagnosed Disease Network (UDN) (opens in a new tab) | UDN & Harvard University | Informational flyers with illustrations about rare disease, diagnosis, testing, and research in English and Spanish. | F | U & G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| Clinical Pharmacogenetics Implementation Consortium (CPIC) (opens in a new tab) | PharmGKB and the Pharmacogenomics Research Network | International consortium that creates and curates peer-reviewed gene/drug clinical practice guidelines to facilitate the use of pharmacogenetic tests in patient care. (Now hosted within ClinPGx.) | F | G |
| ClinPGx (opens in a new tab) | National Institutes of Health, US Department of Health and Human Services, & Stanford University | Successor to PharmGKB. NIH-funded resource that integrates the PharmGKB, CPIC, and PharmCAT projects into one comprehensive clinical pharmacogenomics (PGx) knowledgebase — curated gene–drug associations, prescribing guidance, and PGx education. | F | U & G |
| FDA Table of Pharmacogenomic Biomarkers in Drug Labeling (opens in a new tab) | US Food and Drug Administration | Provides a table which lists therapeutic products and biomarkers from Drugs@FDA with pharmacogenomic information found in the drug labeling. | F | U & G |
| Pharmacogenomic Research Network (opens in a new tab) | Pharmacogenomics research Network | A forum to advance, promote, support, encourage and facilitate communication among researchers, educators and practitioners in pharmacogenomics and related sciences through scientific meetings, seminars, publications and related activities. Offers a curated set of resources and tools to support data analysis of related to pharmacogenomic research. | F | G & R |
| Pharmacogenomic Resources (opens in a new tab) | NIH National Cancer Institute | Links to resources that may be of interest to cancer researchers interested in the area of pharmacogenomics. | F | G & R |
| Test 2 Learn: ISCC-PEG (opens in a new tab) | ISCC-PEG & University of Pittsburgh | Pharmacogenomic educational modules for healthcare providers that be taken free of charge. | F | U & G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| American College of Medical Genetics (opens in a new tab) | American College of Medical Genetics | Educational resources, events, practice guidelines, and policy statements | F & C | G |
| ESH Genetic Education Materials and Resources (euroGEMS) (opens in a new tab) | European Society of Human Genetics | A repository of materials and resources for genetic professionals, Universities/students, patients and families, primary schools, secondary schools, and ELSI topics | F | U & G |
| National Coordinating Center for Regional Genetic Networks (opens in a new tab) | NCC/ American College of Medical Genetics and Genomics | Links to resources for seven Regional Networks (RGNs), a National Coordinating Center (NCC), and the National Genetics Education and Family Support Center (NGEFSC). Links to resources to improve the health of medically underserved by promoting the translation of genetic medicine into public health and health care services. | F | G |
| National Society of Genetic Counselors (opens in a new tab) | National Society of Genetic Counselors (NSGC) | Provides genetic education, policy statements, webinars and a database to locate credentialed genetic professionals. | F | U & G |
| Resource | Organization | Description | Cost | Audience level |
|---|---|---|---|---|
| Understanding Genetic Screening and Maternal Health Care (opens in a new tab) | Society for Women's Health Research | A resource to assist healthcare providers frame and implement genetic screening across the woman's health continuum. | F | U & G |