Document Type
Article
Publication Date
4-3-2023
Original Citation
Schuster A,
Crossnohere N,
Bachini M,
Blair C,
Carpten J,
Claus E,
Colditz G,
Ding L,
Drake B,
Fields R,
Janeway K,
Kwan B,
Lenz H,
Ma Q,
Mishra S,
Paskett E,
Rebbeck T,
Ricker C,
Stern M,
Sussman A,
Tiner J,
Trent J,
Verhaak R,
Wagle N,
Willman C,
Bridges J.
Priorities to Promote Participant Engagement in the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network. Cancer Epidemiol Biomarkers Prev. 2023;32(4):487-95.
Keywords
JGM, Humans, Informed Consent, Neoplasms, Motivation, Genomics, Educational Status
JAX Source
Cancer Epidemiol Biomarkers Prev. 2023;32(4):487-95.
ISSN
1538-7755
PMID
36791345
DOI
https://doi.org/10.1158/1055-9965.EPI-22-0356
Grant
This work was supported by grants from the NCI. J Carpten and H Lenz are recipients of 1U2CCA252971–01A1; E Claus, B Kwan, and R Verhaak are recipients of 1U2CCA252979–01A1; G.A. Colditz, L. Ding, R.C. Fields, and B.F. Drake are recipients of 1U2CCA252981–01A1; N. Wagle and K.A. Janeway are recipients of 1U2CCA252974–01; C. Willman and J.M. Trent are recipients of 1U2CCA252973– 01; J.F. Bridges, Q. Ma, and E.D. Paskett are recipients of 1U24CA252977–01.
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.
Comments
This open access article is distributed under the Creative Commons Attribution 4.0 International (CC BY 4.0) license.