Resources
- General Education
- Cancer
- Prenatal/Family Planning
- Rare Genetic Disease
- Cardiovascular Genetics
- At-Home Genetic Test/DTC
- Advocacy + Support Groups
- Family History
- Research Opportunities
General Education
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
Dig Deeper and Learn: Cancer Genetics
Breast Cancer
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
Colorectal Cancer
Education: CDC: What is Colon Cancer? | ACS: Colorectal Cancer | Mayo Clinic: Colon 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
Ovarian Cancer
Education: ACOG: Ovarian Cancer FAQ | ACOG: Endometrial Cancer FAQ | CDC: Gynecologic Cancers | National Ovarian Cancer Coalition
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
Pancreatic Cancer
Education: ACS: Pancreatic Cancer | Mayo Clinic: Pancreatic Cancer | Pancreatic Cancer Action Network
Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Breast, Ovarian, and Pancreatic Cancer | AGA Clinical Practice Update on Pancreas Cancer Screening in High-Risk Individuals: Expert Review
Pancreatic Cancer Surveillance Programs
Prostate Cancer
Education: ACS: Prostate Cancer | CDC: Prostate Cancer | Prostate Health Education Network (PHEN) | Us Too | Zero Cancer
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
Stomach Cancer
Education: ACS: Stomach Cancer | Mayo Clinic: Stomach Cancer | NCI: Stomach Cancer | No Stomach for Cancer
Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Colorectal Cancer
Uterine/Endometrial Cancer
Education: ACOG: Ovarian Cancer FAQ | ACOG: Endometrial Cancer FAQ | CDC: Gynecologic Cancers | National Ovarian Cancer Coalition
Guidelines: NCCN: Genetic/Familial High-Risk Assessment: Colorectal Cancer | Society of Gynecologic Oncology: Risk Assessment for Inherited Gynecologic Cancer Predispositions
Other Guidelines & Statements Related to Cancer Genetics
ACMG: Referral Indications for Cancer Predisposition Assessment
ASCO: Genetic and Genomic Testing for Cancer Susceptibility
CDC: Applications for Hereditary Breast and Ovarian Cancer
Lynch Syndrome
ACOG: Practice Bulletin for Lynch Syndrome
ASCRS: Surgical Treatment for Patients with Lynch Syndrome
CDC: Applications for Lynch Syndrome
MyLynch: A Cancer Risk Tool for People with Lynch syndrome
Rare Cancer Syndromes
Dig Deeper and Learn: Prenatal 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
ACOG: Carrier Screening FAQ | “New ACMG Guidelines for Expanded Carrier Screening with Barbara Harrison and Katie Stoll.” October 11, 2021. The Beagle Has Landed. (podcast)
Newborn Screening
Trisomy
NORD: Trisomy 13 Syndrome | GHR: Trisomy 13 | NORD: Trisomy 18 Syndrome | GHR: Trisomy 18 | GHR: Down Syndrome | National Down Syndrome Society |Trisomy 18 Foundation | SOFT
Cystic Fibrosis
ACOG: Cystic Fibrosis FAQ | Claire’s Place Foundation (Cystic Fibrosis) | Cystic Fibrosis Foundation | CysticFibrosis.com
Fragile X Syndrome
NORD: Fragile X Syndrome | GHR: Fragile X Syndrome | CDC: What is Fragile X Syndrome? | National Fragile X Foundation | Xtraordinary Joy
Spinal Muscular Atrophy (SMA)
NORD: Spinal Muscular Atrophy | GHR: Spinal Muscular Atrophy | MDA: Spinal Muscular Atrophy | Cure SMA | Together in SMA
Hemoglobinopathies
CDC: Sickle Cell Disease | CDC: Thalassemia | GHR: Alpha Thalassemia | GHR: Beta Thalassemia | CDC: Hemoglobinopathies Project
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
Dig Deeper and Learn: Rare Disease Genetics
Rare Genetic Conditions
Global Genes: RARE List
NIH: Rare Disease FAQ
NORD: Rare Disease Database
Face2Gene
Cardiovascular Genetics
NIH: Familial HCM | NIH: Familial TAAD | NIH: Familial Atrial Fibrillation | NIH: Brugada Syndrome | NSGC: Cardiovascular Genetics Pocket Guide | NSGC: Am I at Risk for Heart Disease
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
Dig Deeper and Learn: At-Home Genetic Testing
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
At-Home DNA Test + Family History Review
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
Colorectal Cancer Alliance | Fight Colorectal Cancer
Rare Genetic Conditions Support
Ben’s Friends | Global Genes | Huntington’s Disease Society of America | NORD | SWAN USA | Fanconi Anemia Research Fund | Cerebral Palsy Guide
Cardiovascular Genetics Support
Adult Congenital Heart Association | Genetic Aortic Disorders Association of Canada | Hypertrophic Cardiomyopathy Association | Marfan Foundation | Sudden Arrhythmia Death Syndrome
Direct To Consumer (At Home DNA Test Kits) Support
Family History Information
NIH: Why is it important to know my family medical history?
Tools for Collecting Family Health History
Surgeon General: My Family Health Portrait
Discussing Family Health History & Diagnoses with Children
Adoptee and Unexpected Results Resources
Research Opportunities
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.