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  1. Demonstrating ‘respect for persons’ in clinical research: findings from qualitative interviews with diverse genomics research participants.Stephanie A. Kraft, Erin Rothwell, Seema K. Shah, Devan M. Duenas, Hannah Lewis, Kristin Muessig, Douglas J. Opel, Katrina A. B. Goddard & Benjamin S. Wilfond - 2021 - Journal of Medical Ethics 47 (12):e8-e8.
    The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...)
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  • Bridging the Researcher-Participant Gap: A Research Agenda to Build Effective Research Relationships.Stephanie A. Kraft, Devan M. Duenas, Hannah Lewis & Seema K. Shah - 2020 - American Journal of Bioethics 20 (5):31-33.
    Volume 20, Issue 5, June 2020, Page 31-33.
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  • Precluding Consent by Clinicians Who Are Both the Attending and the Investigator: An Outdated Shibboleth?Anita Shah, Kathryn Porter, Sandra Juul & Benjamin S. Wilfond - 2015 - American Journal of Bioethics 15 (4):80-82.
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  • Informed Consent in Two Alzheimer’s Disease Research Centers: Insights From Research Coordinators.Christine M. Suver, Jennifer K. Hamann, Erin M. Chin, Felicia C. Goldstein, Hanna M. Blazel, Cecelia M. Manzanares, Megan J. Doerr, Sanjay J. Asthana, Lara M. Mangravite, Allan I. Levey, James J. Lah & Dorothy F. Edwards - 2020 - AJOB Empirical Bioethics 11 (2):114-124.
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  • Overcoming barriers to informed consent in neurological research: Perspectives from a national survey.Lauren R. Sankary, Megan E. Zelinsky, Paul J. Ford, Eric C. Blackstone & Robert J. Fox - 2023 - Research Ethics 19 (1):42-61.
    The ethical recruitment of participants with neurological disorders in clinical research requires obtaining initial and ongoing informed consent. The purpose of this study is to characterize barriers faced by research personnel in obtaining informed consent from research participants with neurological disorders and to identify strategies applied by researchers to overcome those barriers. This study was designed as a web-based survey of US researchers with an optional follow-up interview. A subset of participants who completed the survey were selected using a stratified (...)
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