Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network-Reference-Cited by-同舟云学术

Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network

Published:2023-02-15 Issue:4 Volume:32 Page:487-495
ISSN:1055-9965
Container-title:Cancer Epidemiology, Biomarkers & Prevention
language:en
Short-container-title:

Author:

Schuster Anne LR.¹^ORCID,Crossnohere Norah L.²^ORCID,Bachini Melinda³^ORCID,Blair Cindy K.⁴^ORCID,Carpten John D.⁵^ORCID,Claus Elizabeth B.⁶⁷^ORCID,Colditz Graham A.⁸^ORCID,Ding Li⁹^ORCID,Drake Bettina F.¹⁰^ORCID,Fields Ryan C.¹¹^ORCID,Janeway Katherine A.¹²^ORCID,Kwan Bethany M.¹³^ORCID,Lenz Heinz-Josef¹⁴^ORCID,Ma Qin¹^ORCID,Mishra Shiraz I.¹⁵^ORCID,Paskett Electra D.¹⁶^ORCID,Rebbeck Timothy R.¹⁷^ORCID,Ricker Charité¹⁸^ORCID,Stern Mariana C.¹⁹^ORCID,Sussman Andrew L.²⁰^ORCID,Tiner Jessica C.²¹^ORCID,Trent Jeffrey M.²²^ORCID,Verhaak Roel GW.²³^ORCID,Wagle Nikhil²⁴^ORCID,Willman Cheryl²⁵²⁶^ORCID,Bridges John FP.¹^ORCID,

Affiliation:

1. 1Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, Ohio.

2. 2Division of General Internal Medicine, Department of Internal Medicine, The Ohio State University, Columbus, Ohio.

3. 3Cholangiocarcinoma Foundation, Herriman, Utah.

4. 4Department of Internal Medicine, University of New Mexico Comprehensive Cancer Center and Health Sciences Center, Albuquerque, New Mexico.

5. 5Institute of Translational Genomics, Department of Translational Genomics, Keck School of Medicine USC, Norris Comprehensive Cancer Center, Los Angeles, California.

6. 6Department of Biostatistics, Yale School of Public Health, New Haven, Connecticut.

7. 7Department of Neurosurgery, Brigham and Women's Hospital, Boston, Massachusetts.

8. 8Department of Surgery, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, Missouri.

9. 9Division of Oncology, Department of Medicine, Washington University School of Medicine, St. Louis, Missouri.

10. 10Division of Public Health Sciences, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, Missouri.

11. 11Division of General Surgery, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, Missouri.

12. 12Dana-Farber / Boston Children's Cancer and Blood Disorders Center, and Broad Institute of MIT and Harvard, Harvard Medical School, Boston, Massachusetts.

13. 13Department of Emergency Medicine, University of Colorado Anschutz Medical Campus, Aurora, Colorado.

14. 14Keck School of Medicine of USC, Norris Comprehensive Cancer Center, Los Angeles, California.

15. 15Departments of Pediatrics and Family and Community Medicine, University of New Mexico Comprehensive Cancer Center, University of New Mexico Health Sciences Center, Albuquerque, New Mexico.

16. 16Division 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.

17. 17Harvard TH Chan School of Public Health, Broad Institute of MIT and Harvard, and the Dana-Farber Cancer Institute, Boston, Massachusetts.

18. 18Division of Medical Oncology, Department of Medicine, Keck School of Medicine USC, Norris Comprehensive Cancer Center, Los Angeles, California.

19. 19Department of Population and Public Health Sciences & Urology, Keck School of Medicine of USC, Norris Comprehensive Cancer Center, Los Angeles, California.

20. 20Department of Family and Community Medicine, University of New Mexico Comprehensive Cancer Center and Health Sciences Center, Albuquerque, New Mexico.

21. 21Epidemiology and Genomics Research Program, Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, Maryland.

22. 22Translational Genomics Research Institute part of City of Hope, Phoenix, Arizona.

23. 23The Jackson Laboratory for Genomic Medicine, Farmington, Connecticut.

24. 24Dana-Farber Cancer Institute, Broad Institute of MIT and Harvard, Harvard Medical School, Dana-Farber/Harvard Cancer Center, and Count Me In, Boston, Massachusetts.

25. 25Department of Laboratory Medicine and Pathology, Mayo Clinic Comprehensive Cancer Center, Mayo Clinic, Rochester, Minnesota.

26. 26University of New Mexico School of Medicine and Comprehensive Cancer Center, Albuquerque, New Mexico.

Abstract

AbstractBackground: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.

Funder

National Cancer Institute

Publisher

American Association for Cancer Research (AACR)

Subject

Oncology,Epidemiology

Link

https://aacrjournals.org/cebp/article-pdf/doi/10.1158/1055-9965.EPI-22-0356/3270111/epi-22-0356.pdf

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