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Integrating Community Voices in Data-Centric Research: Overcoming Barriers to Meaningful Engagement
American Journal of Bioethics 25 (2):87-90 (2025)
Abstract
We appreciate Chapman and colleagues’ (2025) advocacy for revising the Common Rule to address the downstream effects of data-centric research, particularly the potential for group harms such as sti...Other Versions
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Citations of this work
Wanted, but Elusive: Clear Solutions for Addressing Potential Group Harm in Data-Centric Research.Carolyn Riley Chapman, Patrick Dwyer, Kellie Owens, Courtney Berrios, Heini M. Natri, Arthur L. Caplan & Gwendolyn P. Quinn - 2025 - American Journal of Bioethics 25 (4):1-4.
Wanted, but Elusive: Clear Solutions for Addressing Potential Group Harm in Data-Centric Research.Carolyn Riley Chapman, Patrick Dwyer, Kellie Owens, Courtney Berrios, Heini M. Natri, Arthur L. Caplan & Gwendolyn P. Quinn - 2025 - American Journal of Bioethics 25 (4):13-16.
References found in this work
Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?Carolyn Riley Chapman, Gwendolyn P. Quinn, Heini M. Natri, Courtney Berrios, Patrick Dwyer, Kellie Owens, Síofra Heraty & Arthur L. Caplan - 2023 - American Journal of Bioethics 25 (2):47-60.
Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?Carolyn Riley Chapman, Gwendolyn P. Quinn, Heini M. Natri, Courtney Berrios, Patrick Dwyer, Kellie Owens, Síofra Heraty & Arthur L. Caplan - 2023 - American Journal of Bioethics 25 (2):47-60.
Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?Carolyn Riley Chapman, Gwendolyn P. Quinn, Heini M. Natri, Courtney Berrios, Patrick Dwyer, Kellie Owens, Síofra Heraty & Arthur L. Caplan - 2023 - American Journal of Bioethics 25 (2):47-60.
Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations.Mark A. Rothstein, John T. Wilbanks, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Megan Doerr, Barbara J. Evans, Catherine M. Hammack-Aviran, Michelle L. McGowan & Stacey A. Tovino - 2020 - Journal of Law, Medicine and Ethics 48 (S1):196-226.
Public involvement in the governance of population-level biomedical research: unresolved questions and future directions.Sonja Erikainen, Phoebe Friesen, Leah Rand, Karin Jongsma, Michael Dunn, Annie Sorbie, Matthew McCoy, Jessica Bell, Michael Burgess, Haidan Chen, Vicky Chico, Sarah Cunningham-Burley, Julie Darbyshire, Rebecca Dawson, Andrew Evans, Nick Fahy, Teresa Finlay, Lucy Frith, Aaron Goldenberg, Lisa Hinton, Nils Hoppe, Nigel Hughes, Barbara Koenig, Sapfo Lignou, Michelle McGowan, Michael Parker, Barbara Prainsack, Mahsa Shabani, Ciara Staunton, Rachel Thompson, Kinga Varnai, Effy Vayena, Oli Williams, Max Williamson, Sarah Chan & Mark Sheehan - 2021 - Journal of Medical Ethics 47 (7):522-525.
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