14 found
Order:
  1.  3
    Greater Than Minimal Risk, No Direct Benefit – Bridging Drug Trials and Novel Therapy in Pediatric Populations.Benjamin S. Wilfond, Devan M. Duenas & Liza-Marie Johnson - 2020 - American Journal of Bioethics 20 (4):102-103.
    Volume 20, Issue 4, May 2020, Page 102-103.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  2.  5
    Click Here to Complete This Survey: Online Research, Adolescents, and Parental Consent.Liza-Marie Johnson, Devan M. Duenas & Benjamin S. Wilfond - 2020 - American Journal of Bioethics 20 (10):82-83.
    Volume 20, Issue 10, October 2020, Page 82-83.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  3.  5
    Ethical Drug Development for Rare Childhood Diseases: When There Are Limited But Promising Data in Adults, How to Choose Between Safety or Efficacy Studies?Liza-Marie Johnson, Devan M. Duenas & Benjamin S. Wilfond - 2020 - American Journal of Bioethics 20 (4):111-113.
    Volume 20, Issue 4, May 2020, Page 111-113.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  4.  4
    Conflicts of Interest and Recommendations for Clinical Treatments That Benefit Researchers.Benjamin S. Wilfond, Devan M. Duenas & Liza-Marie Johnson - 2020 - American Journal of Bioethics 20 (10):90-91.
    Volume 20, Issue 10, October 2020, Page 90-91.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  5.  5
    When Professional Meets Personal: How Should Research Staff Advertise on Social Media for Research Opportunities?Liza-Marie Johnson, Devan M. Duenas & Benjamin S. Wilfond - 2021 - American Journal of Bioethics 21 (10):38-39.
    As part of the regulatory review process, both the Food and Drug Administration and Office for Human Research Protections (U.S. Department of Health and Human Services [HHS]...
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  6.  8
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  7. To Disclose or Not to Disclose: Secondary Findings of XXY Chromosomes.Liza-Marie Johnson, Devan M. Duenas & Benjamin S. Wilfond - 2022 - American Journal of Bioethics 22 (10):87-88.
    Genomic sequencing is becoming more common both in clinical practice and as a routine aspect of much research. Over the last 15 years there has been ongoing discussion about the implications of gen...
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  8.  6
    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):8-8.
    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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  9. Enrolling Adolescents with Rare Disease for Early Phase Clinical Trials While Under the Care of Child Protection Services: Balancing Protection and Access.Benjamin S. Wilfond, Devan M. Duenas & Liza-Marie Johnson - 2022 - American Journal of Bioethics 22 (4):81-82.
    For many rare diseases, the availability of effective interventions is limited or non-existent. In this context, clinical research evaluating emerging interventions may be the only potentially “the...
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  10.  6
    Participant Reactions to a Literacy-Focused, Web-Based Informed Consent Approach for a Genomic Implementation Study.Stephanie A. Kraft, Kathryn M. Porter, Devan M. Duenas, Claudia Guerra, Galen Joseph, Sandra Soo-Jin Lee, Kelly J. Shipman, Jake Allen, Donna Eubanks, Tia L. Kauffman, Nangel M. Lindberg, Katherine Anderson, Jamilyn M. Zepp, Marian J. Gilmore, Kathleen F. Mittendorf, Elizabeth Shuster, Kristin R. Muessig, Briana Arnold, Katrina A. B. Goddard & Benjamin S. Wilfond - 2021 - AJOB Empirical Bioethics 12 (1):1-11.
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  11.  1
    Supporting Investigators in Challenging Cases: Unease in the Face of an Ethically Appropriate Action.Liza-Marie Johnson, Devan M. Duenas & Benjamin S. Wilfond - 2021 - American Journal of Bioethics 21 (4):98-99.
    As medicine and science advance, new ethical questions emerge. Over time, deliberation and analysis result in a somewhat settled approach to a problem. Often the settled approach is based on group...
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  12.  7
    Reexamining the Categorical Exclusion of Pediatric Participants From Controlled Human Infection Trials.Sean C. Murphy, Devan M. Duenas, Thomas L. Richie & Seema K. Shah - 2020 - Bioethics 34 (8):785-796.
    Direct download  
     
    Export citation  
     
    Bookmark  
  13.  5
    Clearing Muddy Waters: The Need to Reconceptualize Minor Increase Over Minimal Risk in Pediatric Rare Disease Research.Devan M. Duenas, Benjamin S. Wilfond & Liza-Marie Johnson - 2020 - American Journal of Bioethics 20 (4):8-10.
    Volume 20, Issue 4, May 2020, Page 8-10.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  14.  1
    Supporting Community-Academic Research Partnerships: Reflections From the Ground.Benjamin S. Wilfond, Devan M. Duenas & Liza-Marie Johnson - 2021 - American Journal of Bioethics 21 (10):44-45.
    Currently, there is consensus that community engagement and partnerships are essential to inclusive patient-centered clinical research. Yet there is variation about what it means to do this well an...
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark