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genomics Education Resources repository

Genomics Education Resources: for self-guided learning or resources to help add genomics into your nursing curriculum and Practice

Compiled by:  ISONG Global Membership and Education Committees

Do you have a resource you would like ISONG to review for possible inclusion in the table?

Submit resource here 

Updated: 12/05/2023

Basic Genetics Education Genetic Testing
Cancer Genetics Newborn Screening/Metabolism
Clinical Practice Patient Education and Support
Cultural Awareness Pharmacogenomics
Ethical, Legal, Social Implications Professional Organizations
Family Health History Reproductive Health

Basic Genetics Education

Resource

Organization

Description

Free (F)
Charge (C)

Undergraduate (U)Graduate (G)
Research (R)

DNA from the Beginning

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

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

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

U.S. Nationa Library of Medicine/Medline

Links to fundamental information about genetics created for the general public

F

U & G

Introduction to Genetics 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

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

The University of Utah

Educational website that provides engaging, multimedia educational materials concerning a variety of topics including genetics. Excelent DNA to RNA transcription activity.

F

U & G

Linkage

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

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

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?"

Netflix

Entertaining video on genetics basics. It is designed for kids, but students could benefit from this, too. Cartoon episodes. Requres Netflix subscription.

F

U

Talking Glossary

National Human Research institute

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

University of Leicester

Genetics teaching resources for teachers and learners in schools and higher education, health professionals and the general public simple experiments sutable for all ages with tutorial material videos on useful techniques and linkes to other evaluated resources.

F

U & G

Your Genome

Welcome Genome Center

Eduactional resources, including interactive video and games for high-school and undergraduate students related to genetics, health and society.

F

U & G


Cancer Genetics

Resource

Organization

Description

Free (F)
Charge (C)

Undergraduate (U)Graduate (G)
Research (R)

Oncology Nursing Society Genomics and Precision Oncology Learning Library

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

FORCE (Facing Our Risk of Cancer Empowered)

Resource to improve the lives of individuals and families facing hereditary cancer.

F

U & G

Genetics Toolkit

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 


Clinical Practice

Resource

Organization

Description

Free (F)Charge (C)

Undergraduate (U)
Graduate (G)
Research (R)

Clinical Education at JAX

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

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
G3C (Global Genetics and Genomics Community)

Global Genetics and Genomics Community (G3C)

Repository of genomic health care simulations. Unfolding case studies and links to additional resources for basic introduction to genetics.

F

G

Gene Review

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

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

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 NHS Health Education England Educational offerings for health professionals. Teaching resources and Genomics glossary.  F  U & G

Genomics Education Resource Center (GenomeEd)

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

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

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

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

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

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) National Human Genome Research Institute a tool kit providing links to external resources, clinical exemplars for integrating genetics/genomics into healthcare systems. Interactive evolving case studies to test genetic nurse competencies. F U & G

Nursing Genomics FAQ

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®  Online Mendelian Inheritance in Man® (OMIM)  An Online Catalog of Human Genes and Genetic Disorders  U & G
Resources on Hemolytic Anemias and PKD  Agios An Online Catalog of Human Genes and Genetic Disorders  U & G
Telling Stories, Understanding Real Life Genetics 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.  U & G

University of Texas Health Adult Cardiovascular Genomics Certificate

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

Wellcome Connecting Science

Hands-on Training

Online Training

Wellcome Genome Campus, UK

Genomics and biomedical training for research scientists, clinicians, and healthcare professionals.

 F & C G & R 


Cultural Awareness

Resource

Organization

Description

Free (F)
Charge (C)

Undergraduate (U)
Graduate (G)
Research (R)

The Genetic Counseling Cultural Competence Toolkit  

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


Ethical, Legal, Social, Implications

Resource

Organization

Description

Free (F)
Charge (C)

Undergraduate (U)
Graduate (G)
Research (R)

Genetic Information Non-discrimination Act of 2008

US Equal Employment Opportunity Commission

Copy of the actual GINA legislation

F

U & G

LawSeq 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

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


Family Health History

Resource

Organization

Description

Free (F)
Charge (C)

Undergraduate (U)
Graduate (G)
Research (R)

FamGenix FamGenix  Pedigree drawing, family history, and risk assessment tools  F U & G 
Family Health History

Center for Disease Control and Prevention

Resources and information about collecting family health history, including online tools

F

U & G

Pedigree Software

Progeny Free online pedigree certification software

F & C

U & G


Genetic Testing

Resource

Organization

Description

Free (F)
Charge (C)

Undergraduate (U)
Graduate (G)
Research (R)

Biochemgen

University of California San Diego (UCSD) Biochemical Genetics and Metabolomics Laboratory

A Searchable list of biochemical genetic tests and the laboratories that offer each.

F

G & R

Direct to Consumer Testing FAQ

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 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  NHGRI, Practioner 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 patiens' genomic test reports. this guide is not intended to help select a test, but rather to help providers navigate test results.  F G & R 


Newborn Screening/Metabolism

Resource

Organization

Description

Free (F)Charge (C)

Undergraduate (U)Graduate (G)
Research (R)

ACMG Act Sheets & Algorithms

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

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 Seattle Children's Hospital Resources for families of children with metabolic conditions, presented at an 8th grade or lower reading level

F

U & G
Heritable Disorders in Newborns and Children - Education and Training Work Group Health Resources & Services Administration (HRSA) Communication Guide to help nurses and APRNs to frame the initial notification and discussion with parents about positive/abnormal/out of the range newborn screening results. G

Vademecum Metabolicum (Metabolic disorders)

Johannes Zschocke & Georg F. Hoffmann

Metabolics GmbH, Friedrichsdorf, Germany
Quick reference with diagrams for inborn errors of metabolism. Phone app available.  F


Patient Education and Support

Resource

Organization

Description

Free (F)
Charge (C)

Undergraduate (U)
Graduate (G)
Research (R)

Clinical Genetics Patient and Family Education Resources

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

Advisory Committee on Heritable Disorders in Children (ACHDC) 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

YouTube

Case study of individual with cystic fibrosis

F

U & G

Hemophilia and the Fencer: Luke's story today

YouTube

Case study of Individual with hemophilia

F

U & G

Parent Education and Support – Genetics and Chromosomal conditions 

 March of DimesParent information about how and testing for genes and chromosomes that can sometimes change, causing serious health conditions and birth defects. FU&G 

Resources on pyruvate kinase deficiency

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
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)

UDN & Harvard University Informational flyers with illustrations about rare disease, diagnosis, testing, and research in English and Spanish.  U & G

Pharmacogenomics

Resource Organization Description

Free (F)
Charge (C)

Undergraduate (U)
Graduate (G)
Research (R)

Clinical Pharmacogenetics Implementation Consortium (CPIC®) Partnership between PharmGKB and Pharmacogenics Research Network An international consortium facilitating use of pharmacogenetic tests for patient care  F  G
 FDA Table of Pharmacogenomic Biomarkers in Drug Labeling  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
 PharmGKB  PharmGKB  Comprehensive resource that curates knowledge about the impact of genetic variation on drug response for clinicians and researchers.  F  U & G
Pharmacogenomic Research Network 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 NIH National Cancer Institute    Links to resources that may be of interest to cancer researchers interested in the area of pharmacogenomics.  F  G & R

Professional Organizations

Resource

Organization

Description

Free (F)
Charge (C)

Undergraduate (U)
Graduate (G)
Research (R)

American College of Medical Genetics  

American College of Medical Genetics

Educational resources, events, practice guidelines, and policy statements

F & C

G

ESH Genetic Education Materials and Resources (euroGEMS)

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

NCC/ American College of Medical Genetics and Genomics

Links to resources for seven Regional Netowrks (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

National Society of Genetic Counselors (NSGC)

Provides genetic education, policy statements, webinars and a database to locate credentialed genetic professionals.

F

U & G


Reproductive Health

Resource

Organization

Description

Free (F)
Charge (C)

Undergraduate (U)
Graduate (G)
Research (R)

Understanding Genetic Screening and Maternal Health Care

Society for Woman's Health Research

A rescource to assist healthcare providers frame and implement genetic screening across the woman's health continuum.

F

U & G


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