Hereditary Cancer Resources

Genetics and Hereditary Cancer

• Ambry Genetics: Provides a good Genetics 101 module that includes sections on Genes, Genetic Alterations/Mutations, Genetic Testing, and Terminology. Their video What is Hereditary Cancer? Is a quick introduction that explains sporadic versus hereditary cancer.

• Kintalk: An educational and family communication site for individuals with hereditary cancer conditions and their families. Contains Genetics 101 information and discussion boards for members.

• Colorado Genetics Alliance: Covers basics of breast, ovarian, colon, the process of counseling and testing, and personal stories. Also information about hereditary cancer, risk assessment, genetic counseling and testing, and provides a directory of health systems/clinics with genetic counselors in Colorado.

• Michigan Genetics Connection: Explores Basic Genetics, Cancer and Genetics, Genes Associated with Breast Cancer, Genetic Testing, Managing Your Cancer Risk, and Visiting a Cancer Genetics Clinic. They dive into more technical information specific to BRCA, chromosomes, and more.

• Michigan Genetics Resource: Discusses genetic traits and patterns (autosomal, dominant, etc.) using pedigrees. And provides a family history risk assessment tool you can use with clients.

• American Cancer Society: Covers Genes and Cancer, Family Cancer Syndromes, and Genetic Testing for Cancer Risk to learn more about the complex links between genes and cancer.

• National Cancer Institute: Contains information on the Genetics of Cancer, with sections on Genetic Changes and Cancer, Hereditary Cancer Syndromes, Genetic Tests for Hereditary Cancer Syndromes, and Identifying Genetic Changes in Cancer.

Genetic Testing and Counseling

• Myriad My Risk: This website has several Patient Education Tools that can help guide your discussions on hereditary cancer syndromes including a Genetic counseling and testing overview video by a genetic counselor in several languages (Spanish, Chinese, Creole, Greek, Polish, Dutch, Portuguese, Russian, and Vietnamese) and a sample letter for sharing testing results with family members.

• National Society of Genetic Counselors: About Genetic Counselors page reviews who genetic counselors are, reasons to see a genetic counselor, preparing for an appointment, and provides other resources such as their Find a Genetic Counselor directory.

• Colorado Cancer Screening Program (CCSP): Family History Cancer Risk Screening Tool, covered in this course, is used to assess if patient should be referred to genetic counseling. Offered in English and Spanish.

• Genetic Screening and Navigation Toolkit: The UT Southwestern Medical Center provides educational resources for clinicians and patients to increase awareness of hereditary cancer, as well as implementation resources for increasing identification of patients with hereditary cancer and improving access to genetics services.

• American Society of Clinical Oncology (ASCO) – Cancer.net: The ASCO provides patient education and information on genetics, including the genetics of cancer, collecting family cancer history, hereditary cancer-related syndromes, genetic testing for cancer risk, what to expect when meeting with a genetic counselor, and links to many resources.

Communication with Family

• Facing Our Risk of Cancer Empowered (FORCE): Up-to-date, expert-reviewed information and resources that help people make informed medical decisions. Includes several guides you can use with patients, such as The Genes Between Us: Your guide to sharing genetic test results with relatives and Worksheet for Sharing Cancer Information with the Family.

• Let’s Talk – Sharing Info About Your Family Cancer Risk: Provides advice for talking to adults and children hereditary cancer risk and an interactive simulator where a client can practice talking to a family member about hereditary cancer and helping them make good decisions about their health.

Screening Program Resources

• U.S. Preventive Services Task Force (USPSTF): BRCA-Related Cancer Recommendation Statement outlines the Risk Assessment, Genetic Counseling, and Genetic Testing recommendations for women with a personal or family history of breast, ovarian, tubal, or peritoneal cancer or an ancestry associated with BRCA1/2 gene mutation.

• Centers for Disease Control and Prevention (CDC): Tier 1 Genomic Applications Toolkit for Public Health Departments, this toolkit focuses on three Tier 1 applications, people who are at increased risk for adverse health outcomes because they have genetic mutations which predispose them to one of the following conditions: Hereditary Breast and Ovarian Cancer Syndrome, Lynch syndrome, or Familial hypercholesterolemia. This toolkit currently focuses on these three applications because of the public health burden of the diseases associated with them and because there are clear steps that can be followed to improve health and prevent disease.

  • From Genetic Counseling in Individuals to Cascade Screening in Populations: An Emerging Role for Public Health Practice

• National Colorectal Cancer Roundtable: Risk assessment and screening toolkit to detect familial, hereditary and early onset colorectal cancer. Tools for establishing a cancer risk assessment and referral system, including workflow development, risk assessment tools, screening protocols and identifying genetic specialists, management protocols, training and evaluation considerations, clinical skills and tools, and key messages.

• Oncology Nurse Advisor (ONA) Navigation Summit 2015: An article about navigators key role in using genetics and genomics for cancer risk identification.

Updated June 7, 2023 by Westley Lighthall

Questions? Contact westley.lighthall@ucdenver.edu