Optimizing participant and community engagement in cancer genomic sequencing research

Norah L Crossnohere¹, Anne L R Schuster², Cindy K Blair³, Hasani Bland⁴, John D Carpten⁵, Elizabeth B Claus⁶, Graham A Colditz⁷, Diane Diehl⁸, Li Ding⁹, Bettina F Drake¹⁰, Ryan C Fields¹¹, Suzanne George¹², Katherine Janeway¹³, Hyoshin Kim¹⁴, Heinz-Josef Lenz¹⁵, Jennifer W Mack¹³, Charité Ricker¹⁵, Mariana C Stern¹⁵, Andrew Sussman¹⁶, Jeffrey Trent¹⁷, Eliezer Van Allen¹⁸, Roel Verhaak¹⁹, Cheryl Willman²⁰, John F P Bridges¹⁴, Shiraz I Mishra²¹, Bethany M Kwan²²; PE-CGS Network

Collaborators, Affiliations

Collaborators

PE-CGS Network:
Adetunji T Toriola, Aimee S James, Akila Anandarajah, Alan Tomkinson, Alanna Church, Albert M Lai, Amanda Toland, Andrew Sussman, Anne E Heffernan, Ashley Noriega, Bailey A Martin-Giacalone, Ben Yi Tew, Bethany Davis, Bethany M Kwan, Bettina Drake, Bianca Rosales, Blanca Ovalle, Bodour Salhia, Brian Crompton, Carmen E Chavez, Carrie Cibulskis, Carrie Stoll, Caryn Lerman, Catherine DesRoches, Chandrajit Raut, Charité N Ricker, Charles Wiggins, Cheryl Willman, Christine M Marx, Cindy Blair, Crystal Rubalcava, Daisy Hernandez, David Craig, David Engelthaler, David Merrell, David Spencer, Dean Wallace, Debra MacKenzie, Dennis McCance, Diane Diehl, Eirian Siegal-Botti, Elena Taylor, Eliezer Van Allen, Elizabeth B Claus, Enrique Velazquez-Villarreal, Eric J Duncavage, Erin Lynn Linnenbringer, Evelina Ceca, Fei Wan, Feng Chen, Fernanda Martins Rodrigues, Francisco G Carranza, Gad Getz, Gerald Gooden, Grace Cross, Graham A Colditz, Hank Dart, Heather Hampel, Heinz-Josef Lenz, Hershel Clark, Huining Kang, Hyoshin Kim, Ira Shulman, Itzya Ulloa, James Lowey, James W Gauderman, Janet Rodriguez, Jason L Hornick, Jeff MacKeigan, Jeffrey Henderson, Jeffrey Trent, Jennifer Mack, Jennifer Tsui, Jessica Mozersky, Jessica Sanchez, Jill Stopfer, Joe McElroy, Joel Sanchez Mendez, John Carpten, John F P Bridges, Jonathan Keats, Joseph Vega, Juan Pablo Lewinger, Judy Garber, Julia M W Wong, Juliana Barnard, Julie Fortier, Julie O Culver, Kalin Kyte, Katherine A Janeway, Keehoon Lee, Kelsey Pettes, Kevin C Johnson, Kevin Hall, Kian H Lim, Kiran Vij, Koby Blackwater, Lauren Fisher, Li Ding, Linbin Zhang, Lindsay Lennox, Liz Salmi, Lourdes Baezconde- Garbanati, Lucia L Enriquez, Mackenzie Postel, Maeve Smart, Mallery Quetawki, Mariana C Stern, Mark A Fiala, Mark A Watson, Mary C Politi, Matthew W DeCamp, Melinda Bachini, Michael C Wendl, Michael Hochman, Michael Slade, Mikaela Kosich, Natalia C Gutierrez, Nicholas Schork, Nicole Hamblet, Nijole Pollock, Noriela Elia, Oindrila Bhattacharyya, Parker Chastain, Patricia I Dickson, Patricia Nez Henderson, Priscilla Merriam, Raed Jaffal, Rajni Mehta, Raven Chavez, Ravi Vij, Reyka G Jayasinghe, Ricardo Gonzalez-Fisher, Roel Verhaak, Rosa Barahona, Rose Du, Ryan C Fields, Sandra Algaze, Sara Byron, Seeta Rajpara, Serina Ovalle, Shannon Lee-Sin, Shawnia Ryan, Shiraz Mishra, Stacey Gabriel, Stacy Gray, Stephanie Solomon Cargill, Suzanne George, Syma Iqbal, Taisha Hendrickson, Tamrin Chowdhury, Tawny Boyce, Timothy Rebbeck, Timothy Whitsett, Ursa Brown- Glaberman, V Shane Pankratz, Vicky Yamamoto, Yin Cao, Yonatan Amzaleg, Zachary Crees

Affiliations

¹ Division of General Internal Medicine, Department of Internal Medicine, The Ohio State University, Columbus, OH.
² Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH. Electronic address: anne.schuster@osumc.edu.
³ Department of Internal Medicine, University of New Mexico Comprehensive Cancer Center and Health Sciences Center, Albuquerque, NM.
⁴ Washington University in St. Louis, St. Louis, MO.
⁵ City of Hope, Duarte, CA.
⁶ Department of Biostatistics, Yale School of Public Health, New Haven, CT; Department of Neurosurgery, Brigham and Women's Hospital, Boston, MA.
⁷ Department of Surgery, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, MO.
⁸ Count Me In, The Broad Institute of MIT and Harvard, Cambridge, MA.
⁹ Division of Oncology, Department of Medicine, Washington University School of Medicine, St. Louis, MO.
¹⁰ Division of Public Health Sciences, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, MO.
¹¹ Department of Surgery and the Alvin J. Siteman Cancer Center at Washington University School of Medicine, St. Louis, MO.
¹² Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA; Harvard Medical School, Boston, MA.
¹³ Harvard Medical School, Boston, MA; Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, MA.
¹⁴ Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH.
¹⁵ University of Southern California, Norris Comprehensive Cancer Center, Keck School of Medicine, Los Angeles, CA.
¹⁶ Department of Family and Community Medicine, University of New Mexico Comprehensive Cancer Center and Health Sciences Center, Albuquerque, NM.
¹⁷ Translational Genomics Research Institute part of City of Hope, Phoenix, AZ.
¹⁸ Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA; Broad Institute of Harvard and MIT, Cambridge, MA.
¹⁹ Department of Neurosurgery, Yale School of Medicine, New Haven CT.
²⁰ University of New Mexico School of Medicine and Comprehensive Cancer Center, Albuquerque, NM; Mayo Clinic Comprehensive Cancer Center, Mayo Clinic, Rochester, MN.
²¹ Departments of Pediatrics and Family and Community Medicine, University of New Mexico Comprehensive Cancer Center, University of New Mexico Health Sciences Center, Albuquerque, NM.
²² Department of Emergency Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO.

PMID: 40517303
DOI: 10.1016/j.gim.2025.101483

Optimizing participant and community engagement in cancer genomic sequencing research

Norah L Crossnohere et al. Genet Med. 2025 Sep.

. 2025 Sep;27(9):101483.

doi: 10.1016/j.gim.2025.101483. Epub 2025 Jun 11.

Authors

Collaborators

PE-CGS Network:
Adetunji T Toriola, Aimee S James, Akila Anandarajah, Alan Tomkinson, Alanna Church, Albert M Lai, Amanda Toland, Andrew Sussman, Anne E Heffernan, Ashley Noriega, Bailey A Martin-Giacalone, Ben Yi Tew, Bethany Davis, Bethany M Kwan, Bettina Drake, Bianca Rosales, Blanca Ovalle, Bodour Salhia, Brian Crompton, Carmen E Chavez, Carrie Cibulskis, Carrie Stoll, Caryn Lerman, Catherine DesRoches, Chandrajit Raut, Charité N Ricker, Charles Wiggins, Cheryl Willman, Christine M Marx, Cindy Blair, Crystal Rubalcava, Daisy Hernandez, David Craig, David Engelthaler, David Merrell, David Spencer, Dean Wallace, Debra MacKenzie, Dennis McCance, Diane Diehl, Eirian Siegal-Botti, Elena Taylor, Eliezer Van Allen, Elizabeth B Claus, Enrique Velazquez-Villarreal, Eric J Duncavage, Erin Lynn Linnenbringer, Evelina Ceca, Fei Wan, Feng Chen, Fernanda Martins Rodrigues, Francisco G Carranza, Gad Getz, Gerald Gooden, Grace Cross, Graham A Colditz, Hank Dart, Heather Hampel, Heinz-Josef Lenz, Hershel Clark, Huining Kang, Hyoshin Kim, Ira Shulman, Itzya Ulloa, James Lowey, James W Gauderman, Janet Rodriguez, Jason L Hornick, Jeff MacKeigan, Jeffrey Henderson, Jeffrey Trent, Jennifer Mack, Jennifer Tsui, Jessica Mozersky, Jessica Sanchez, Jill Stopfer, Joe McElroy, Joel Sanchez Mendez, John Carpten, John F P Bridges, Jonathan Keats, Joseph Vega, Juan Pablo Lewinger, Judy Garber, Julia M W Wong, Juliana Barnard, Julie Fortier, Julie O Culver, Kalin Kyte, Katherine A Janeway, Keehoon Lee, Kelsey Pettes, Kevin C Johnson, Kevin Hall, Kian H Lim, Kiran Vij, Koby Blackwater, Lauren Fisher, Li Ding, Linbin Zhang, Lindsay Lennox, Liz Salmi, Lourdes Baezconde- Garbanati, Lucia L Enriquez, Mackenzie Postel, Maeve Smart, Mallery Quetawki, Mariana C Stern, Mark A Fiala, Mark A Watson, Mary C Politi, Matthew W DeCamp, Melinda Bachini, Michael C Wendl, Michael Hochman, Michael Slade, Mikaela Kosich, Natalia C Gutierrez, Nicholas Schork, Nicole Hamblet, Nijole Pollock, Noriela Elia, Oindrila Bhattacharyya, Parker Chastain, Patricia I Dickson, Patricia Nez Henderson, Priscilla Merriam, Raed Jaffal, Rajni Mehta, Raven Chavez, Ravi Vij, Reyka G Jayasinghe, Ricardo Gonzalez-Fisher, Roel Verhaak, Rosa Barahona, Rose Du, Ryan C Fields, Sandra Algaze, Sara Byron, Seeta Rajpara, Serina Ovalle, Shannon Lee-Sin, Shawnia Ryan, Shiraz Mishra, Stacey Gabriel, Stacy Gray, Stephanie Solomon Cargill, Suzanne George, Syma Iqbal, Taisha Hendrickson, Tamrin Chowdhury, Tawny Boyce, Timothy Rebbeck, Timothy Whitsett, Ursa Brown- Glaberman, V Shane Pankratz, Vicky Yamamoto, Yin Cao, Yonatan Amzaleg, Zachary Crees

Affiliations

¹ Division of General Internal Medicine, Department of Internal Medicine, The Ohio State University, Columbus, OH.
² Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH. Electronic address: anne.schuster@osumc.edu.
³ Department of Internal Medicine, University of New Mexico Comprehensive Cancer Center and Health Sciences Center, Albuquerque, NM.
⁴ Washington University in St. Louis, St. Louis, MO.
⁵ City of Hope, Duarte, CA.
⁶ Department of Biostatistics, Yale School of Public Health, New Haven, CT; Department of Neurosurgery, Brigham and Women's Hospital, Boston, MA.
⁷ Department of Surgery, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, MO.
⁸ Count Me In, The Broad Institute of MIT and Harvard, Cambridge, MA.
⁹ Division of Oncology, Department of Medicine, Washington University School of Medicine, St. Louis, MO.
¹⁰ Division of Public Health Sciences, Washington University School of Medicine, Alvin J. Siteman Cancer Center, St. Louis, MO.
¹¹ Department of Surgery and the Alvin J. Siteman Cancer Center at Washington University School of Medicine, St. Louis, MO.
¹² Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA; Harvard Medical School, Boston, MA.
¹³ Harvard Medical School, Boston, MA; Dana-Farber/Boston Children's Cancer and Blood Disorders Center, Boston, MA.
¹⁴ Department of Biomedical Informatics, The Ohio State University College of Medicine, Columbus, OH.
¹⁵ University of Southern California, Norris Comprehensive Cancer Center, Keck School of Medicine, Los Angeles, CA.
¹⁶ Department of Family and Community Medicine, University of New Mexico Comprehensive Cancer Center and Health Sciences Center, Albuquerque, NM.
¹⁷ Translational Genomics Research Institute part of City of Hope, Phoenix, AZ.
¹⁸ Department of Medical Oncology, Dana-Farber Cancer Institute, Boston, MA; Broad Institute of Harvard and MIT, Cambridge, MA.
¹⁹ Department of Neurosurgery, Yale School of Medicine, New Haven CT.
²⁰ University of New Mexico School of Medicine and Comprehensive Cancer Center, Albuquerque, NM; Mayo Clinic Comprehensive Cancer Center, Mayo Clinic, Rochester, MN.
²¹ Departments of Pediatrics and Family and Community Medicine, University of New Mexico Comprehensive Cancer Center, University of New Mexico Health Sciences Center, Albuquerque, NM.
²² Department of Emergency Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO.

PMID: 40517303
DOI: 10.1016/j.gim.2025.101483

Abstract

Purpose: We describe strategies implemented across research centers of the Participant Engagement and Cancer Genome Sequencing (PE-CGS) Network to optimize engagement of participants and communities in cancer genomics research. We also present consensus definitions of engagement and engagement optimization, informed by our shared experiences in the Network.

Methods: Key informant interviews and a document review identified engagement and optimization strategies across PE-CGS research centers. Findings were synthesized using qualitative content analysis. Consensus on definitions of engagement and optimization were developed through iterative review by PE-CGS members.

Results: PE-CGS research centers adopted tailored strategies based on community needs and scientific gaps. Engagement strategies included community-based efforts (eg, advisory boards and newsletters) and participant-focused approaches (eg, enhanced informed consent and decision support tools). Optimization strategies leveraged scientific methods (eg, randomized controlled trials and surveys) to evaluate engagement. Engagement was described as the sustained and meaningful interactions between researchers, participants, and communities. Optimization was described as the application of scientific methods to refine and improve engagement and research processes and outcomes.

Conclusion: Engagement and optimization strategies have informed research planning, conduct, and dissemination across PE-CGS. These approaches and definitions provide a foundation for developing evidence-based practices to strengthen participant and community involvement in cancer genomics research.

Keywords: Cancer Moonshot; Engagement; Genetics; Medical Oncology; Patient Participation.

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Conflict of interest statement

Conflict of Interest Norah L. Crossnohere reports grants from Pfizer outside of the submitted work and personal fees from Boehringer Ingelheim. Anne L.R. Schuster reports grants from Pfizer outside of the submitted work; John F.P. Bridges reports personal fees from Boehringer Ingelheim. Eliezer Van Allen reports personal fees from Enara Bio, Manifold Bio, Monte Rosa, Novartis Institute for Biomedical Research, Serinus Bio, and TracerDx and research support from Novartis, BMS, Sanofi, and NextPoint and equity in Tango Therapeutics, Genome Medical, Genomic Life, Enara Bio, Manifold Bio, Microsoft, Monte Rosa, Riva Therapeutics, Serinus Bio, Syapse, and TracerDx. Roel Verhaak reports equity in Boundless Bio. Elizabeth B. Claus is an advisory research board member to Servier Pharmaceuticals. John D. Carpten reports personal fees from Stand Up to Cancer Scientific Advisory Committee, BreakThrough Cancer Scientific Advisory Board; and personal fees from Roche/Genentech Advancing Inclusive Research External Advisory Board outside the submitted work. All other authors declare no conflicts of interest.

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Optimizing participant and community engagement in cancer genomic sequencing research

Collaborators

Affiliations

Optimizing participant and community engagement in cancer genomic sequencing research

Authors

Collaborators

Affiliations

Abstract

Conflict of interest statement

MeSH terms