Anne LR Schuster, Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, Ohio
Norah L. Crossnohere, Division of General Internal Medicine, Department of Internal Medicine The Ohio State University, Columbus, Ohio
Melinda Bachini, Cholangiocarcinoma Foundation, Herriman, Utah
Cindy K. Blair, Department of Internal Medicine, University of New Mexico Comprehensive Cancer Center and Health Sciences Center, Albuquerque, New Mexico
John D. Carpten, Institute of Translational Genomics, Department of Translational Genomics, Keck School of Medicine USC, Norris Comprehensive Cancer Center, Los Angeles, California
Elizabeth B. Claus, Department of Biostatistics, Yale School of Public Health, New Haven, Connecticut; Department of Neurosurgery, Brigham and Women’s Hospital, Boston, Massachusetts
Graham A. Colditz, Department of Surgery, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, Missouri
Li Ding, Division of Oncology, Department of Medicine, Washington University School of Medicine, St. Louis, Missouri
Bettina F. Drake, Division of Public Health Sciences, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, Missouri
Ryan C. Fields, Division of General Surgery, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, Missouri
Katherine A. Janeway, Dana-Farber / Boston Children's Cancer and Blood Disorders Center, and Broad Institute of MIT and Harvard, Harvard Medical School, Boston, Massachusetts
Bethany M. Kwan, Department of Emergency Medicine, University of Colorado Anschutz Medical Campus, Aurora, Colorado
Heinz-Josef Lenz, Keck School of Medicine of USC, Norris Comprehensive Cancer Center, Los Angeles, California
Qin Ma, Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, Ohio
Shirz I. Mishra, Departments of Pediatrics and Family and Community Medicine, University of New Mexico Comprehensive Cancer Center, University of New Mexico Health Sciences Center, Albuquerque, New Mexico
Electra D. Paskett, Division of Cancer Prevention and Control, Department of Internal Medicine, College of Medicine; Division of Epidemiology, College of Public Health, The Ohio State University, Columbus, Ohio
Timothy R. Rebbeck, Harvard TH Chan School of Public Health, Broad Institute of MIT and Harvard, and the Dana-Farber Cancer Institute, Boston, Massachusetts
Charité Ricker, Division of Medical Oncology, Department of Medicine, Keck School of Medicine USC, Norris Comprehensive Cancer Center, Los Angeles, California
Mariana C. Stern, Department of Population and Public Health Sciences & Urology, Keck School of Medicine of USC, Norris Comprehensive Cancer Center, Los Angeles, California
Andrew L. Sussman, Department of Family and Community Medicine, University of New Mexico Comprehensive Cancer Center and Health Sciences Center, Albuquerque, New Mexico
Jessica C. Tiner, Epidemiology and Genomics Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland
Jeffrey M. Trent, Translational Genomics Research Institute part of City of Hope, Phoenix, Arizona
Joel GW Verhaak, The Jackson Laboratory for Genomic Medicine, Farmington, Connecticut
Nikhil Wagle, Dana-Farber Cancer Institute, Broad Institute of MIT and Harvard, Harvard Medical School, Dana-Farber/Harvard Cancer Center, and Count Me In, Boston, Massachusetts
Cheryl Willman, Department of Laboratory Medicine and Pathology, Mayo Clinic Comprehensive Cancer Center, Mayo Clinic, Rochester, Minnesota; University of New Mexico School of Medicine and Comprehensive Cancer Center, Albuquerque, New Mexico
John FP Bridges, Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, Ohio
Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network

Document Type

Article

Publication Date

4-3-2023

Abstract

Background:

Engaging diverse populations in cancer genomics research is of critical importance and is a fundamental goal of the NCI Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Established as part of the Cancer Moonshot, PE-CGS is a consortium of stakeholders including clinicians, scientists, genetic counselors, and representatives of potential study participants and their communities. Participant engagement is an ongoing, bidirectional, and mutually beneficial interaction between study participants and researchers. PE-CGS sought to set priorities in participant engagement for conducting the network's research.

Methods:

PE-CGS deliberatively engaged its stakeholders in the following four-phase process to set the network's research priorities in participant engagement: (i) a brainstorming exercise to elicit potential priorities; (ii) a 2-day virtual meeting to discuss priorities; (iii) recommendations from the PE-CGS External Advisory Panel to refine priorities; and (iv) a virtual meeting to set priorities.

Results:

Nearly 150 PE-CGS stakeholders engaged in the process. Five priorities were set: (i) tailor education and communication materials for participants throughout the research process; (ii) identify measures of participant engagement; (iii) identify optimal participant engagement strategies; (iv) understand cancer disparities in the context of cancer genomics research; and (v) personalize the return of genomics findings to participants.

Conclusions:

PE-CGS is pursuing these priorities to meaningfully engage diverse and underrepresented patients with cancer and posttreatment cancer survivors as participants in cancer genomics research and, subsequently, generate new discoveries.

Impact:

Data from PE-CGS will be shared with the broader scientific community in a manner consistent with participant informed consent and community agreement.

DOI

10.1158/1055-9965.EPI-22-0356

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