Fernandez, CV, Kodish, E, Weijer, C. Informing study participants of research results: an ethical imperative. IRB 2003; 25(3): 12–19.
Fernandez, CV, et al. Offering to return results to research participants: attitudes and needs of principal investigators in the children’s oncology group. Journal of Pediatric Hematology/Oncology 2003; 25(9): 704–708.
Shalowitz, DI, Miller, FG. Disclosing individual results of clinical research – implications of respect for participants. JAMA 2005; 294(6): 737–740.
Long, CR, et al. Health researchers’ experiences, perceptions and barriers related to sharing study results with participants. Health Research Policy and Systems 2019; 17(1): 25. doi: 10.1186/s12961-019-0422-5
Cox, K, et al. Feedback of trial results to participants:a survey of clinicians’ and patients’ attitudes and experiences. European Journal of Oncology Nursing 2011; 15(2): 124–129. doi: 10.1016/j.ejon.2010.06.009
Long, CR, et al. Health research participants’ preferences for receiving research results. Clinical Trials 2016; 13(6): 582–591. doi: 10.1177/1740774516665598
Partridge, AH, Winer, EP. Informing clinical trial participants about study results. JAMA 2002; 288(3): 363–365. doi: 10.1001/jama.288.3.363
Purvis, RS, et al. Qualitative study of participants’ perceptions and preferences regarding research dissemination. AJOB Empirical Bioethics 2017; 8(2): 69–74. doi: 10.1080/23294515.2017.1310146
Wong, CA, Hernandez, AF, Califf, RM. Return of research results to study participants: uncharted and untested. JAMA 2018; 320(5): 435–436. doi: 10.1001/jama.2018.7898
Tong, A, Sainsbury, P, Craig, J. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. International Journal for Quality in Health Care 2007; 19(6): 349–357. doi: 10.1093/intqhc/mzm042
Fereday, J, Muir-Cochrane, E. Demonstrating rigor using thematic analysis: a hybrid approach of inductive and deductive coding and theme development. International Journal of Qualitative Methods 2006; 5, 80–92. doi: 10.1177/160940690600500107
Kreuter, MW, McClure, SM. The role of culture in health communication. Annual Review of Public Health 2004; 25(1): 439–455. doi: 10.1146/annurev.publhealth.25.101802.123000
Green, LW, et al. Diffusion theory and knowledge dissemination, utilization, and integration in public health. Annual Review of Public Health 2009; 30(1): 151–174. doi: 10.1146/annurev.publhealth.031308.100049
Shalowitz, DI, Miller, FG. Communicating the results of clinical research to participants: attitudes, practices, and future directions. PloS Med 2008; 5(5): e91. doi: 10.1371/journal.pmed.0050091
Renegar, G, et al. Returning genetic research results to individuals: points-to-consider. Bioethics 2006; 20(1): 24–36.
Bredenoord, AL, et al. Disclosure of individual genetic data to research participants: the debate reconsidered. Trends in Genetics 2011; 27(2): 41–47. doi: 10.1016/j.tig.2010.11.004
Milner, LC, Liu, EY, Garrison, NA. Relationships matter: ethical considerations for returning results to family members of deceased subjects. The American Journal of Bioethics 2013; 13(10): 66–67. doi: 10.1080/15265161.2013.828533
Wilfond, BS, Carpenter, KJ. Incidental findings in pediatric research. The Journal of Law, Medicine & Ethics 2008; 36(2): 332–340. doi: 10.1111/j.1748-720X.2008.00277.x
National Academics of Sciences, Engineering, and Medicine. Returning individual research results to participants: guidance for a new research paradigm. Washington, DC: The National Academies Press, 2018.
Chen, MS, et al. Twenty years post-NIH Revitalization Act: renewing the case for enhancing minority participation in cancer clinical trials. Cancer 2014; 120(7): 1091–1096. doi: 10.1002/cncr.28575
Durant, RW, et al. Perspectives on barriers and facilitators to minority recruitment for clinical trials among cancer center leaders, investigators, research staff and referring clinicians. Cancer 2014; 120(7): 1097–1105. doi: 10.1002/cncr.28574
Ford, JG, et al. Barriers to recruiting underrepresented populations to cancer clinical trials: a systematic review. Cancer 2008; 112(2): 228–242. doi: 10.1002/cncr.23157
George, S, Duran, N, Norris, K. A systematic review of barriers and facilitators to minority research participation among African Americans, Latinos, Asian Americans, and Pacific Islanders. American Journal of Public Health 2014; 104(2): e16–e31. doi: 10.2105/AJPH.2013.301706
Sharrocks, K, et al. The impact of socioeconomic status on access to cancer clinical trials. British Journal of Cancer 2014; 111(9): 1684–1687. doi: 10.1038/bjc.2014.10
Wendler, D, et al. Are racial and ethnic minorities less willing to participate in health research? PloS Medicine 2006; 3(2): e19. doi: 10.1371/journal.pmed.0030019
McDavitt, B, et al. Dissemination as dialogue: building trust and sharing research findings through community engagement. Preventing Chronic Disease 2016; 13: 150473. doi: 10.5888/pcd13.150473
Wilkins, CH, et al. Understanding what information is valued by research participants, and why. Health Affairs 2019; 38(3): 399–407. doi: 10.1377/hlthaff.2018.05046