Ethical Considerations in Medical Research Participation

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Cheng, A. C., Bascompte Moragas, E., Thomas, E., O’Neal, L., Harris, P. A., Chatterjee, R., Goodrich, J., Roberts, J., Cheema, S., Lindo, S., Ford, D. E., Martinez, L., Carey, S., Dozier, A., Dykes, C., Panjala, P., Wagenknecht, L., Andrews, J. E., Shuping, J., … Kost, R. G. (2025). Standards and infrastructure for multisite deployment of the research participant perception survey. JAMIA Open, 8(2). https://doi.org/10.1093/jamiaopen/ooaf017
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Idnay, B., Xu, Z., Adams, W. G., Adibuzzaman, M., Anderson, N. R., Bahroos, N., Bell, D. S., Bumgardner, C., Campion, T., Castro, M., Cimino, J. J., Cohen, I. G., Dorr, D., Elkin, P. L., Fan, J. W., Ferris, T., Foran, D. J., Hanauer, D., Hogarth, M., … Peng, Y. (2025). Environment scan of generative AI infrastructure for clinical and translational science. Npj Health Systems, 2(1). https://doi.org/10.1038/s44401-024-00009-w
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Kost, R. G., Andrews, J., Chatterjee, R., Cheng, A. C., Connally, L., Dozier, A., Dykes, C., Ford, D., Green, N. S., Jiang, C., Khoury-Shakour, S., Lindo, S., Marder, K., Martinez, L., Qureshi, A., Roberts, J., & Schlesinger, N. (2025). What research participants say about their research experiences in Empowering the Participant Voice: Outcomes and actionable data. Journal of Clinical and Translational Science, 9(1). https://doi.org/10.1017/cts.2025.3
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Bickell, N. A., May, B., Havrylchuk, I., John, J., Lin, S., Tao, A., Yagnik, R., & Tatonetti, N. P. (2024). Implementation of a rule-based algorithm to find patients eligible for cancer clinical trials. JAMIA Open, 7(4). https://doi.org/10.1093/jamiaopen/ooae131
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Niño de Rivera, S., Masterson Creber, R., Zhao, Y., Eslami, S., Mangal, S., Dugdale, L. S., & Reading Turchioe, M. (2024). Public perspectives on increased data sharing in health research in the context of the 2023 National Institutes of Health Data Sharing Policy. PLOS ONE, 19(8), e0309161. https://doi.org/10.1371/journal.pone.0309161
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Proceedings of the 16th Annual Conference on the Science of Dissemination and Implementation in Health. (2024). Implementation Science, 19(S2). https://doi.org/10.1186/s13012-024-01370-y
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Beauchemin, M. P., Ortega, M., Santacroce, S. J., Robles, J. M., Ruiz, J., Hall, A. G., Kahn, J. M., Fu, C., Orjuela-Grimm, M., Hillyer, G. C., Solomon, S., Pelletier, W., Montiel-Esparza, R., Blazin, L. J., Kline, C., Seif, A. E., Aristizabal, P., Winestone, L. E., & Velez, M. C. (2024). Clinical trial recruitment of people who speak languages other than English: a Children’s Oncology Group report. JNCI Cancer Spectrum, 8(4). https://doi.org/10.1093/jncics/pkae047
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Gilbertson, R. J., Behjati, S., Böttcher, A.-L., Bronner, M. E., Burridge, M., Clausing, H., Clifford, H., Danaher, T., Donovan, L. K., Drost, J., Eggermont, A. M. M., Emerson, C., Flores, M. G., Hamerlik, P., Jabado, N., Jones, A., Kaessmann, H., Kleinman, C. L., Kool, M., … Pfister, S. M. (2024). The Virtual Child. Cancer Discovery, 14(4), 663–668. https://doi.org/10.1158/2159-8290.cd-23-1500
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Anastasi, J. K., Capili, B., Norton, M., McMahon, D. J., & Marder, K. (2024). Recruitment and retention of clinical trial participants: understanding motivations of patients with chronic pain and other populations. Frontiers in Pain Research, 4. https://doi.org/10.3389/fpain.2023.1330937
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Arias, J. J., Tyler, A. M., Beskow, L. M., Carillo, M. C., Dickinson, S., Goldman, J., Majumder, M. A., Mello, M. M., Snyder, H. M., & Yokoyama, J. S. (2024). Data stewardship in FTLD research: Investigator and research participant views. Alzheimer’s & Dementia, 20(4), 2886–2893. Portico. https://doi.org/10.1002/alz.13719
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Ho, P., Yu, W. H., Tee, B. L., Lee, W., Li, C., Gu, Y., Yokoyama, J. S., Reyes‐Dumeyer, D., Choi, Y., Yang, H., Vardarajan, B. N., Tzuang, M., Lieu, K., Lu, A., Faber, K. M., Potter, Z. D., Revta, C., Kirsch, M., McCallum, J., … Wang, L. (2024). Asian Cohort for Alzheimer’s Disease (ACAD) pilot study on genetic and non‐genetic risk factors for Alzheimer’s disease among Asian Americans and Canadians. Alzheimer’s & Dementia, 20(3), 2058–2071. Portico. https://doi.org/10.1002/alz.13611
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Kilbride, M., Egleston, B. L., Chung, W. K., Olopade, O., Maxwell, K. N., Shah, P., Churpek, J. E., Fleisher, L., Terry, M. B., Fetzer, D., Gaieski, J. B., Bulafka, J., Espinal, A., Karpink, K., Walser, S., Singleton, D., Palese, M., Siljander, I., Brandt, A., … Bradbury, A. R. (2023). Uptake of Genetic Research Results and Patient-Reported Outcomes With Return of Results Incorporating Web-Based Predisclosure Education. Journal of Clinical Oncology, 41(31), 4905–4915. https://doi.org/10.1200/jco.22.00516
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Harris, P. A., Dunsmore, S. E., Atkinson, J. C., Benjamin, D. K., Bernard, G. R., Dean, J. M., Dwyer, J. P., Ford, D. E., Selker, H. P., Waddy, S. P., Wiley, K. L., Wilkins, C. H., Cook, S. K., Burr, J. S., Edwards, T. L., Huvane, J., Kennedy, N., Lane, K., … Majkowski, R. (2023). Leveraging the Expertise of the CTSA Program to Increase the Impact and Efficiency of Clinical Trials. JAMA Network Open, 6(10), e2336470. https://doi.org/10.1001/jamanetworkopen.2023.36470
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Idnay, B., Fang, Y., Butler, A., Moran, J., Li, Z., Lee, J., Ta, C., Liu, C., Yuan, C., Chen, H., Stanley, E., Hripcsak, G., Larson, E., Marder, K., Chung, W., Ruotolo, B., & Weng, C. (2023). Uncovering key clinical trial features influencing recruitment. Journal of Clinical and Translational Science, 7(1). https://doi.org/10.1017/cts.2023.623
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Watabayashi, K. K., Bell-Brown, A., Kreizenbeck, K., Egan, K., Lyman, G. H., Hershman, D. L., Arnold, K. B., Bansal, A., Barlow, W. E., Sullivan, S. D., & Ramsey, S. D. (2022). Successes and challenges of implementing a cancer care delivery intervention in community oncology practices: lessons learned from SWOG S1415CD. BMC Health Services Research, 22(1). https://doi.org/10.1186/s12913-022-07835-4
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Wang, L., Ho, P., Tee, B. L., Li, C., Gu, Y., Yokoyama, J. S., Vardarajan, B. N., Reyes‐Dumeyer, D., Faber, K. M., Lee, W., Tzuang, M., Choi, Y., Feldman, H. H., Henderson, V., Hsiung, G. R., Mayeux, R., Rosen, H. J., Varma, R., Foroud, T. M., … Chow, T. W. (2022). The Asian Cohort for Alzheimer’s Disease (ACAD) Pilot Study. Alzheimer’s & Dementia, 18(S11). Portico. https://doi.org/10.1002/alz.065599
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Berger, S. M., Appelbaum, P. S., Siegel, K., Wynn, J., Saami, A. M., Brokamp, E., O’Connor, B. C., Hamid, R., Martin, D. M., & Chung, W. K. (2022). Challenges of variant reinterpretation: Opinions of stakeholders and need for guidelines. Genetics in Medicine, 24(9), 1878–1887. https://doi.org/10.1016/j.gim.2022.06.002
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Dhombres, F., Morgan, P., Chaudhari, B. P., Filges, I., Sparks, T. N., Lapunzina, P., Roscioli, T., Agarwal, U., Aggarwal, S., Beneteau, C., Cacheiro, P., Carmody, L. C., Collardeau‐Frachon, S., Dempsey, E. A., Dufke, A., Duyzend, M. H., el Ghosh, M., Giordano, J. L., Glad, R., … Robinson, P. N. (2022). Prenatal phenotyping: A community effort to enhance the Human Phenotype Ontology. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 190(2), 231–242. Portico. https://doi.org/10.1002/ajmg.c.31989
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Butler, C. R., Appelbaum, P. S., Ascani, H., Aulisio, M., Campbell, C. E., de Boer, I. H., Dighe, A. L., Hall, D. E., Himmelfarb, J., Knight, R., Mehl, K., Murugan, R., Rosas, S. E., Sedor, J. R., O’Toole, J. F., Tuttle, K. R., Waikar, S. S., Freeman, M., Alexandrov, T., … Zhang, G. (2022). A Participant-Centered Approach to Understanding Risks and Benefits of Participation in Research Informed by the Kidney Precision Medicine Project. American Journal of Kidney Diseases, 80(1), 132–138. https://doi.org/10.1053/j.ajkd.2021.10.006
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McGuinness, J. E., Bhatkhande, G., Amenta, J., Silverman, T., Mata, J., Guzman, A., He, T., Dimond, J., Jones, T., Kukafka, R., & Crew, K. D. (2022). Strategies to Identify and Recruit Women at High Risk for Breast Cancer to a Randomized Controlled Trial of Web-based Decision Support Tools. Cancer Prevention Research, 15(6), 399–406. https://doi.org/10.1158/1940-6207.capr-21-0593
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Nudelman, K. N. H., Oblak, A. L., Faber, K. M., Reyes‐Dumeyer, D., Issen, H., Lacy, K., Wilmes, K., Marshall, J. D., Case, K. R., Mitchell, C. M., Hobbick, C. C., Mayeux, R., & Foroud, T. M. (2021). NCRAD Family Study and NIA‐LOAD brain tissue: A NCRAD resource. Alzheimer’s & Dementia, 17(S3). Portico. https://doi.org/10.1002/alz.056284
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