Communication and Decision-Making for Individuals with Inherited Cancer Syndromes

Hereditary cancers account for 5%-10% of all cancers, resulting in a considerable population burden of morbidity and mortality. Individuals with an inherited susceptibility to cancer require special and long-term care, and clinical management necessitates interdisciplinary cooperation among multiple providers, including genetic counselors, oncologists, primary care physicians, and surgeons. One of the most challenging tasks facing these individuals is understanding their risk of disease and applying this understanding to decisions involving risk management and disclosure of genetic information to family members.

The Cancer Moonshot℠ Blue Ribbon Panel Report, published in October 2016, identified clinical and research opportunities to expand use of proven cancer prevention and early detection strategies to reduce cancer risk and cancer health differences. The objective of the communication and decision-making for individuals with an inherited susceptibility to cancer initiative was to improve the current state of early detection, genetic counseling, and genetic testing by supporting research to develop, test, and evaluate interventions and implementation approaches to improve cancer risk communication between individuals with an inherited susceptibility to cancer (and their families) and providers so that affected individuals could make informed clinical risk management decisions. Projects were encouraged to include a variety of clinical care settings, genetic counseling and testing methods, and populations.

Current grants were funded in response to the following NOFOs:

  • RFA-CA-19-001, U01, Clinical Trial Optional (expired January 10, 2019)

  • RFA-CA-20-006, U01, Clinical Trial Optional (expired January 22, 2020) 

Selected Grants

PI Name

Organization Name

Project Title

Project Number

Angela R. Bradbury, M.D. University of Pennsylvania A Randomized Hybrid Type I Effectiveness-Implementation Study of an Ehealth Delivery Alternative for Cancer Genetic Testing for Hereditary Cancer Predisposition (EREACH) 1U01CA243702-01A1

 

Daniel C. Chung, M.D. Massachusetts General Hospital Development and Implementation of Electronic Decision AIDS for Genetic Testing in Inherited Cancer Syndromes 1U01CA243695-01A1
Steven J. Katz, M.D., M.P.H. University of Michigan At Ann Arbor A Population-Based Virtual Solution to Reduce Gaps in Genetic Risk Evaluation and Management in Families at High Risk for Hereditary Cancer Syndromes: the Georgia-California Genelink Trial 1U01CA254822-01
Jennifer W. Mack, M.D., M.P.H.

Featured Grantee profile
Dana-Farber Cancer Inst The AYA-RISE Intervention: Risk Information and Screening Education for Adolescents and Young Adults with Cancer Predisposition Syndromes 1U01CA243688-01
Tuya Pal, M.D. Vanderbilt University Medical Center Improving Care After Inherited Cancer Testing (IMPACT) Study 1U01CA254832-01

 

Funding Opportunities

Although there are currently no Cancer Moonshot notices of funding opportunities (NOFOs) accepting applications specifically related to communication and decision-making for individuals with an inherited susceptibility to cancer, investigators with related research ideas may consider submitting applications to:

Title

Announcement #

Expiration Date

Contact

NCI Small Grants Program for Cancer Research PAR-25-078 (NCI Omnibus R03 Clinical Trial Optional) January 08, 2026 Paige Green
240-276-6899
paige.green@nih.gov
NIH Research Project Grant

PA-25-301 (Parent R01 Clinical Trial Not Allowed)

January 08, 2028 Go to https://www.cancer.gov/about-nci/organization to explore NCI divisions and identify program contacts by interest.
Cancer Prevention and Control Clinical Trials Grant Program (R01) PAR-25-167 (R01 Clinical Trial Required) January 08, 2027 Tanya Agurs-Collins
240-276-6956
collinsta@mail.nih.gov
Modular R01s in Cancer Control and Population Sciences (R01 Clinical Trial Optional) PAR-25-172 (R01 Clinical Trial Optional) January 08, 2028 Scott Rogers
240-276-6932
rogerssc@mail.nih.gov

 

Areas of Continued Interest/Emphasis for New Applications

  • Communication strategies for return of an uninformative test result or variant of uncertain significance (VUS)
  • Behavioral and psychological outcomes of receiving an uninformative test result or VUS result
  • Technological, verbal, and written communication approaches to genetic counseling and testing that promote understanding of genetic risk and help guide clinical management decisions
  • Decision-making tools and approaches to promote understanding of disease risk and help guide clinical management decisions
  • Delivery of competent genetic counseling that addresses the varied needs of individuals