- General Education
- Prenatal/Family Planning
- Rare Genetic Disease
- Cardiovascular Genetics
- At-Home Genetic Test/DTC
- Advocacy + Support Groups
- Family History
- Research Opportunities
Introduction to Genetics (Video)
Six Things Everyone Should Know About Genetics
About Genetic Counselors
FAQ About Genetic Counseling
FAQ About Genetics, Disease Prevention and Treatment
NSGC’s Genetic Testing Resource for Patients
Robert Green: The Promise & Peril in Your Genes (podcast episode)
The Jackson Laboratory: Genetic Testing Methods
Genetics/Genomics Competency Center (G2C2)
Public Health & Genetics
ASHG: Genetics in Healthcare
NSGC: Family Health History
ACOG: Family History as Risk Assessment Tool
CDC: Office on Public Health Genomics
Tier 1 Genomic Application Toolkit for Public Health Departments
ACMG: Diagnostic gene sequencing panels: from design to report—a technical standard of the American College of Medical Genetics and Genomics (ACMG)
Ethical, Legal, and Social Issues
NSGC: Position Statement on Human Germline Editing
ASHG: Position Statement on Human Germline Editing
ACMG: Statement on Genome Editing in Clinical Genetics
NSGC: Position Statement on Workplace Wellness Programs
NSGC: Position Statement on Genetic Testing of Minors for Adult-Onset Conditions
NSGC: Position Statement on Regulation of Genetic Testing
ASHG: Statement on Collection and Use of Genetic Information for Law Enforcement
ASHG: Letter of Opposition to H.R.131 Preserving Employee Wellness Programs Act
ACOG: Legal Considerations in Genetic Screening and Testing: Three Case Studies
Education: ACOG: BRCA1/BRCA2 Mutations FAQ | ACS: Breast Cancer | CDC: Breast Cancer | Sharsheret: Your Jewish Genes | Sharsheret: How Do I Tell My Children about My Cancer Gene? | Sharsheret: The Jewish Breast & Ovarian Cancer Community
Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer | ASBS: Consensus Guideline for Genetic Testing for Hereditary Breast Cancer | ACOG: Practice Bulletin for Hereditary Breast and Ovarian Cancer | ACMG: Points to consider: is there evidence to support BRCA1/2 and other inherited breast cancer genetic testing for all breast cancer patients? | ASCO/ASRM/SSO: Management of Hereditary Breast Cancer
Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Colorectal Cancer | NCCN: Colorectal Cancer Screening | BJM Rapid Recommendations: Colorectal cancer screening with faecal immunochemical testing, sigmoidoscopy or colonoscopy: a clinical practice guideline | ACP: Screening for Colorectal Cancer in Asymptomatic Average-Risk Adults: A Guidance Statement from the American College of Physicians | CGA-IGC: Position statement on multigene panel testing for patients with colorectal cancer and/or polyposis
Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer | NCCN: Genetic/Familial High-Risk Assessment: Colorectal Cancer | Society of Gynecologic Oncology: Risk Assessment for Inherited Gynecologic Cancer Predispositions
Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer | NCCN: Prostate Cancer | Implementation of Germline Testing for Prostate Cancer: Philadelphia Prostate Cancer Consensus
Other Guidelines & Statements Related to Cancer Genetics
Prenatal Genetic Screening
ACOG: Prenatal Genetic Screening FAQ | ACOG: Prenatal Genetic Diagnosis Tests FAQ | Cooper Genomics: Preimplantation Genetic Diagnosis (video)* | Myriad: Prenatal Genetic Screening Patient Education (video) | Victor Center: Jewish Genetic Diseases
Extended Carrier Screening
Fragile X Syndrome
Spinal Muscular Atrophy (SMA)
Guidelines for Prenatal Genetics
ACOG: Practice Bulletin on Screening for Fetal Chromosomal Abnormalities
NSGC: Prenatal Cell-free DNA Screening
ACMG: Noninvasive Prenatal Screening for Fetal Aneuploidy (2016 Update)
ACOG: Carrier Screening in the Age of Genomic Medicine
ACOG: Carrier Screening for Genetic Conditions
ACMG: Position Statement on Prenatal/Preconception Expanded Carrier Screening
ACMG: Carrier Screening of individuals of Ashkenazi Jewish descent
ASRM: Pre-pregnancy Counseling
ACOG: Microarrays and Next-Generation Sequencing: The Use of Advanced Genetic Diagnostic Tools in Obstetrics and Gynecology
ACOG: Practice Bulletin on Prenatal Diagnostic Testing for Genetic Disorders
ACMG: Statement on Guidance for Genetic Counseling in Advanced Paternal Age
Guidelines related to Cardiovascular Genetics
ACC: Guideline for Management of Patients With Ventricular Arrhythmias and the Prevention of Sudden Cardiac Death
ACC: Guideline for the Diagnosis and Treatment of Hypertrophic Cardiomyopathy
ACC: Guideline for the Management of Adults With Congenital Heart Disease
ESC: Familial Hypercholesterolemia and guidance for clinicians to prevent coronary heart disease
CDC: Applications for Familial Hypercholesterolemia
ESC: Guidelines on the diagnosis and treatment of aortic diseases
At-Home DNA Testing
ACMG: Position Statement on Direct-to-Consumer Genetic Testing
“Direct-to-consumer genetic testing,” BMJ 2019;367:l5688
FTC: Direct to Consumer Genetic Tests
NSGC: Position Statement on Direct Access to Genetic Testing
Grey Genetics: What Can Your 23andMe Reports Tell You about Your Colorectal Cancer Risk?
Grey Genetics: What Can Your 23andMe Reports Tell You about Your Breast Cancer Risk?
Grey Genetics: You Have a Right to Your Data, but is it Really Your Data if it’s Inaccurate?
From Watershed DNA: A Brief Note about Diabetes Risk Report from 23andMe
Watershed DNA: Non-medical Direct-to-Consumer Genetic Testing Support
Grey Genetics Services related to At-Home DNA Test Services
General Cancer Support
Breast Cancer Support
Breastcancer.org | FORCE | HIS Breast Cancer | Male Breast Cancer Coalition | M.Elia Wellness LLC (Health and Wellness Coach for women with hereditary Breast Cancer) | Sisters Network Inc | Young Survival Coalition
Colorectal Cancer Support
Rare Genetic Conditions Support
Cardiovascular Genetics Support
Direct To Consumer (At Home DNA Test Kits) Support
Family History Information
Tools for Collecting Family Health History
Discussing Family Health History & Diagnoses with Children
Adoptee and Unexpected Results Resources
All of Us — A National, NIH-led effort to gather data from one million or more people living in the United States to accelerate research and improve health. Open to anyone who currently lives in the United States.
The UBC Genetic Connections Study — A survey-based study on individuals’ experiences with direct-to-consumer genetic testing. Open to anyone who has purchased a direct-to-consumer genetic testing kit or is at any stage in the testing process.
The New York Stem Cell Foundation — An opportunity for volunteers to contribute to stem cell research. Must visit Manhattan location to provide a sample.
The Genomic Services Research Program (GSRP) — A new NIH study recruiting people who received unexpected genetic test results about their risk for cancer, heart disease, and other conditions after having genetic testing done for some other reason.
ClinicalTrials.Gov — A database of privately and publicly funded clinical studies conducted around the world.
GenomeConnect — An online registry designed by the (ClinGen) for people who are interested in sharing de-identified genetic and health information to improve understanding of genetics and health. Open to anyone who has had genetic testing, is considering testing, or has a family member that has had testing, regardless of test results or diagnosis. Provides opportunity to connect with other individuals and families as well as the potential to learn about new research opportunities.
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* Resources are chosen based on educational value and do not constitute an endorsement of any laboratory.