Switch to: References

Add citations

You must login to add citations.
  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 (...)
    Download  
     
    Export citation  
     
    Bookmark   5 citations  
  • Consent for Acute Care Research and the Regulatory “Gray Zone”.Laura M. Beskow, Christopher J. Lindsell & Todd W. Rice - 2020 - American Journal of Bioethics 20 (5):26-28.
    Volume 20, Issue 5, June 2020, Page 26-28.
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Sense and Sensibility.Erica Sarah Spatz - 2020 - American Journal of Bioethics 20 (5):24-25.
    Volume 20, Issue 5, June 2020, Page 24-25.
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • From Knowing to Understanding: Revisiting Consent.Kit Rempala, Marley Hornewer, Joseph Vukov, Rohan Meda & Sarah Khan - 2020 - American Journal of Bioethics 20 (5):33-35.
    Dickert et al. (2020) effectively address how factors such as time limitations, stress, and illness severity in acute conditions warrant a deeper evaluation of how current consent processes serve patients. While data suggests that patients “prefer to be asked for permission upfront rather than waiving consent” (2), consent forms themselves “are frequently long and technical, follow rigid templates, and contain language that appears to prioritize institutional protection” (1). Such findings elucidate patients’ valuation of personal agency over settling for the “benefit (...)
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Reimagining the Goal of Informed Consent to Help Patients Make Decisions About Research.Benjamin S. Wilfond & Kathryn M. Porter - 2020 - American Journal of Bioethics 20 (5):22-23.
    Volume 20, Issue 5, June 2020, Page 22-23.
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.Dick L. Willems, Hanno L. Tan, Marieke T. Blom, Rens Veeken & Marieke A. R. Bak - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and (...)
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • A Model to Be Emulated.Kevin P. Weinfurt - 2020 - American Journal of Bioethics 20 (5):18-20.
    Volume 20, Issue 5, June 2020, Page 18-20.
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Reframing Recruitment: Evaluating Framing in Authorization for Research Contact Programs.Candace D. Speight, Charlie Gregor, Yi-An Ko, Stephanie A. Kraft, Andrea R. Mitchell, Nyiramugisha K. Niyibizi, Bradley G. Phillips, Kathryn M. Porter, Seema K. Shah, Jeremy Sugarman, Benjamin S. Wilfond & Neal W. Dickert - 2021 - AJOB Empirical Bioethics 12 (3):206-213.
    Download  
     
    Export citation  
     
    Bookmark   3 citations  
  • Rules of the Road for Patient-Driven Consent Processes.Hayden P. Nix & Charles Weijer - 2020 - American Journal of Bioethics 20 (5):36-37.
    Volume 20, Issue 5, June 2020, Page 36-37.
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • The Principle-at-Risk Analysis (PaRA): Operationalising Digital Ethics by Bridging Principles and Operations of a Digital Ethics Advisory Panel.André T. Nemat, Sarah J. Becker, Simon Lucas, Sean Thomas, Isabel Gadea & Jean Enno Charton - 2023 - Minds and Machines 33 (4):737-760.
    Recent attempts to develop and apply digital ethics principles to address the challenges of the digital transformation leave organisations with an operationalisation gap. To successfully implement such guidance, they must find ways to translate high-level ethics frameworks into practical methods and tools that match their specific workflows and needs. Here, we describe the development of a standardised risk assessment tool, the Principle-at-Risk Analysis (PaRA), as a means to close this operationalisation gap for a key level of the ethics infrastructure at (...)
    Download  
     
    Export citation  
     
    Bookmark  
  • Better Consent—and Not Just for When Time Is Short.Jerry Menikoff - 2020 - American Journal of Bioethics 20 (5):1-3.
    Volume 20, Issue 5, June 2020, Page 1-3.
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Promoting Disclosure and Understanding in Informed Consent: Optimizing the Impact of the Common Rule “Key Information” Requirement.Stephanie A. Kraft, Elliott M. Weiss & Kathryn M. Porter - 2021 - American Journal of Bioethics 21 (5):70-72.
    Millum and Bromwich provide a thorough and thoughtful analysis of what is required for sufficient informed consent, offering distinct conceptualizations of the ethical requirements of disclo...
    Download  
     
    Export citation  
     
    Bookmark  
  • 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.
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • Consent Related Challenges for Neonatal Clinical Trials.Katherine F. Guttmann, Yvonne W. Wu, Sandra E. Juul & Elliott M. Weiss - 2020 - American Journal of Bioethics 20 (5):38-40.
    Volume 20, Issue 5, June 2020, Page 38-40.
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Enlisting the Experts: Experienced Research Participants in Study Planning.Rebecca Dresser - 2020 - American Journal of Bioethics 20 (5):20-22.
    I welcome the efforts described by Neal Dickert and his colleagues in “Partnering with Patients to Bridge Gaps in Consent for Acute Care Research” (Dickert et al. 2020). I am a long-time supporter...
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • Response to Open Peer Commentaries on “Partnering with Patients to Bridge Gaps in Consent for Acute Care Research”.Neal W. Dickert, A. Michelle Bernard, JoAnne M. Brabson, Rodney J. Hunter, Regina McLemore, Andrea R. Mitchell, Stephen Palmer, Barbara Reed, Michele Riedford, Raymond T. Simpson, Candace D. Speight, Tracie Steadman & Rebecca D. Pentz - 2020 - American Journal of Bioethics 20 (8):W12-W13.
    Volume 20, Issue 8, August 2020, Page W12-W13.
    Download  
     
    Export citation  
     
    Bookmark  
  • Significant Protection-Inclusion Tensions in Research on Medical Emergencies: A Practical Challenge for IRBs.Rachel C. Conrad, Neal W. Dickert & Benjamin C. Silverman - 2023 - American Journal of Bioethics 23 (6):91-93.
    Friesen et al. (2023) describe barriers to research in patient populations that have been historically labeled as vulnerable and, as a result, are under-represented in research due to the Instituti...
    Download  
     
    Export citation  
     
    Bookmark   1 citation  
  • Partnering With Research Staff Members to Bridge Gaps in Consent.Emily E. Anderson - 2020 - American Journal of Bioethics 20 (5):28-30.
    Volume 20, Issue 5, June 2020, Page 28-30.
    Download  
     
    Export citation  
     
    Bookmark   2 citations  
  • Assessing the Ethical Distinctions Between Different Types of Prospective Human Germline Genetic Interventions.Audrey R. Chapman - 2020 - American Journal of Bioethics 20 (8):49-50.
    Volume 20, Issue 8, August 2020, Page 49-50.
    Download  
     
    Export citation  
     
    Bookmark  
  • Consent in the Acute Setting: A Necessary Evolution.David Blitzer & Robert M. Sade - 2020 - American Journal of Bioethics 20 (5):40-42.
    Volume 20, Issue 5, June 2020, Page 40-42.
    Download  
     
    Export citation  
     
    Bookmark   1 citation