73 found
Order:
  1.  43
    Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond & Sandra Soo-Jin Lee - 2018 - American Journal of Bioethics 18 (4):3-20.
    With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   19 citations  
  2.  33
    Broad Consent for Research With Biological Samples: Workshop Conclusions.Christine Grady, Lisa Eckstein, Ben Berkman, Dan Brock, Robert Cook-Deegan, Stephanie M. Fullerton, Hank Greely, Mats G. Hansson, Sara Hull, Scott Kim, Bernie Lo, Rebecca Pentz, Laura Rodriguez, Carol Weil, Benjamin S. Wilfond & David Wendler - 2015 - American Journal of Bioethics 15 (9):34-42.
    Different types of consent are used to obtain human biospecimens for future research. This variation has resulted in confusion regarding what research is permitted, inadvertent constraints on future research, and research proceeding without consent. The National Institutes of Health Clinical Center's Department of Bioethics held a workshop to consider the ethical acceptability of addressing these concerns by using broad consent for future research on stored biospecimens. Multiple bioethics scholars, who have written on these issues, discussed the reasons for consent, the (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   27 citations  
  3.  27
    Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations.Susan M. Wolf, Frances P. Lawrenz, Charles A. Nelson, Jeffrey P. Kahn, Mildred K. Cho, Ellen Wright Clayton, Joel G. Fletcher, Michael K. Georgieff, Dale Hammerschmidt, Kathy Hudson, Judy Illes, Vivek Kapur, Moira A. Keane, Barbara A. Koenig, Bonnie S. LeRoy, Elizabeth G. McFarland, Jordan Paradise, Lisa S. Parker, Sharon F. Terry, Brian Van Ness & Benjamin S. Wilfond - 2008 - Journal of Law, Medicine and Ethics 36 (2):219-248.
    No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...)
    Direct download (7 more)  
     
    Export citation  
     
    Bookmark   73 citations  
  4.  32
    Disclosing Individual Genetic Results to Research Participants.Vardit Ravitsky & Benjamin S. Wilfond - 2006 - American Journal of Bioethics 6 (6):8 – 17.
    Investigators and institutional review boards should integrate plans about the appropriate disclosure of individual genetic results when designing research studies. The ethical principles of beneficence, respect, reciprocity, and justice provide justification for routinely offering certain results to research participants. We propose a result-evaluation approach that assesses the expected information and the context of the study in order to decide whether results should be offered. According to this approach, the analytic validity and the clinical utility of a specific result determine whether (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   53 citations  
  5. Should Research Participants Be Notified About Results of Currently Unknown but Potential Significance?Liza-Marie Johnson, Jennifer Zabrowski & Benjamin S. Wilfond - 2019 - American Journal of Bioethics 19 (4):73-74.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  6. Justifying Investigator/Clinician Consent When The Physician-Patient Relationship Can Support Better Research Decision-Making.Benjamin S. Wilfond & Kathryn M. Porter - 2019 - American Journal of Bioethics 19 (4):26-28.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  7.  9
    A Conceptual Model for the Translation of Bioethics Research and Scholarship.Debra J. H. Mathews, D. Micah Hester, Jeffrey Kahn, Amy McGuire, Ross McKinney, Keith Meador, Sean Philpott-Jones, Stuart Youngner & Benjamin S. Wilfond - 2016 - Hastings Center Report 46 (5):34-39.
    While the bioethics literature demonstrates that the field has spent substantial time and thought over the last four decades on the goals, methods, and desired outcomes for service and training in bioethics, there has been less progress defining the nature and goals of bioethics research and scholarship. This gap makes it difficult both to describe the breadth and depth of these areas of bioethics and, importantly, to gauge their success. However, the gap also presents us with an opportunity to define (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  8.  8
    Quality Improvement Ethics: Lessons From the SUPPORT Study.Benjamin S. Wilfond - 2013 - American Journal of Bioethics 13 (12):14-19.
    The Office of Human Research Protections was not justified in issuing findings against the SUPPORT Institutions. Our community can learn from the evolving healthcare transformation into learning health systems by thinking about the novel ethical issues about standard of care research raised by the SUPPORT with the same spirit of quality improvement. The current regulatory framework and the concept of foreseeable research risks is insufficient to advance the debate about the ethics of randomization of standard clinical interventions. This article uses (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   8 citations  
  9.  10
    Comprehension and Choice Under the Revised Common Rule: Improving Informed Consent by Offering Reasons Why Some Enroll in Research and Others Do Not.Benjamin S. Wilfond, Seema K. Shah, Kathryn M. Porter & Stephanie A. Kraft - 2017 - American Journal of Bioethics 17 (7):53-55.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  10.  11
    Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.Susan M. Wolf, Emily Scholtes, Barbara A. Koenig, Gloria M. Petersen, Susan A. Berry, Laura M. Beskow, Mary B. Daly, Conrad V. Fernandez, Robert C. Green, Bonnie S. LeRoy, Noralane M. Lindor, P. Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness & Benjamin S. Wilfond - 2018 - Journal of Law, Medicine and Ethics 46 (1):87-109.
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  11.  8
    Trustworthiness in Untrustworthy Times: Response to Open Peer Commentaries on Beyond Consent.Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Nina Varsava, Kelly E. Ormond, Benjamin S. Wilfond & Sandra Soo-Jin Lee - 2018 - American Journal of Bioethics 18 (5):W6-W8.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  12.  16
    Incidental Findings in Pediatric Research.Benjamin S. Wilfond & Katherine J. Carpenter - 2008 - Journal of Law, Medicine and Ethics 36 (2):332-340.
    The approach to incidental research fndings in children emerges by considering the child-parent relationship and balancing divergent interests and preferences. Incidental fndings with clear and proximate clinical importance should be disclosed to both. We recommend that particularly sensitive or private information should be disclosed to the adolescent frst, while particularly serious information should frst be disclosed to the parent. These approaches allow the researcher to form an alliance with one party prior to engaging the other. However, unlike clinical settings, where (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   7 citations  
  13.  4
    Incidental Findings in Pediatric Research.Benjamin S. Wilfond & Katherine J. Carpenter - 2008 - Journal of Law, Medicine and Ethics 36 (2):332-340.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  14.  2
    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.
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  15.  18
    On the Proliferation of Bioethics Sub-Disciplines: Do We Really Need "Genethics" and "Neuroethics"?Benjamin S. Wilfond & Vardit Ravitsky - 2005 - American Journal of Bioethics 5 (2):20 – 21.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  16.  6
    Ethical Implications of Social Media in Health Care Research.Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond - 2014 - American Journal of Bioethics 14 (10):58-59.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  17.  14
    Lethal Language, Lethal Decisions.Tracy K. Koogler, Benjamin S. Wilfond & Lainie Friedman Ross - 2003 - Hastings Center Report 33 (2):37-41.
  18.  10
    Adrift in the Gray Zone: IRB Perspectives on Research in the Learning Health System.Sandra Soo-Jin Lee, Maureen Kelley, Mildred K. Cho, Stephanie Alessi Kraft, Cyan James, Melissa Constantine, Adrienne N. Meyer, Douglas Diekema, Alexander M. Capron, Benjamin S. Wilfond & David Magnus - 2016 - Ajob Empirical Bioethics 7 (2):125-134.
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  19.  23
    Navigating Growth Attenuation in Children with Profound Disabilities.Benjamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering & The Seattle Growth Attenuation and Ethics Working Group - 2010 - Hastings Center Report 40 (6):27-40.
  20.  11
    Navigating Growth Attenuation in Children with Profound Disabilities.Benjamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski & Sara Goering - 2010 - Hastings Center Report 40 (6):27-40.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  21.  10
    A Randomized Trial of Rapamycin to Increase Longevity and Healthspan in Companion Animals: Navigating the Boundary Between Protections for Animal Research and Human Subjects Research.Holly A. Taylor, Christian Morales, Liza-Marie Johnson & Benjamin S. Wilfond - 2018 - American Journal of Bioethics 18 (10):58-59.
  22.  20
    Cosmetic Surgery in Children with Cognitive Disabilities: Who Benefits? Who Decides?Douglas J. Opel & Benjamin S. Wilfond - 2009 - Hastings Center Report 39 (1):19-21.
    Direct download (6 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  23.  9
    Ethical Considerations for Unblinding a Participant’s Assignment to Interpret a Resolved Adverse Event.Benjamin S. Wilfond, Christian Morales, Liza-Marie Johnson & Holly A. Taylor - 2018 - American Journal of Bioethics 18 (10):66-67.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  24.  6
    Cancer Genetic Susceptibility Testing: Ethical and Policy Implications for Future Research and Clinical Practice.Benjamin S. Wilfond, Karen H. Rothenberg, Elizabeth J. Thomson & Caryn Lerman - 1997 - Journal of Law, Medicine and Ethics 25 (4):243-251.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  25.  23
    Recruitment Approaches for Family Studies: Attitudes of Index Patients and Their Relatives.Sara Chandros Hull, Karen Glanz, Alana Steffen & Benjamin S. Wilfond - forthcoming - IRB: Ethics & Human Research.
    Direct download  
     
    Export citation  
     
    Bookmark   1 citation  
  26.  9
    Integrating Ethics and Patient Safety: The Role of Clinical Ethics in Quality Improvment (Vol 20, Pg 220, 2009).Douglas J. Opel, Dena Brownstein, Douglas S. Diekema, Benjamin S. Wilfond & Robert A. Pearlman - 2009 - Journal of Clinical Ethics 20 (4):370-370.
    Direct download  
     
    Export citation  
     
    Bookmark   2 citations  
  27.  6
    Research to Promote Longevity and Health Span in Companion Dogs: A Pediatric Perspective.Benjamin S. Wilfond, Kathryn M. Porter, Kate E. Creevy, Matt Kaeberlein & Daniel Promislow - 2018 - American Journal of Bioethics 18 (10):64-65.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  28.  11
    Cancer Genetic Susceptibility Testing: Ethical and Policy Implications for Future Research and Clinical Practice.Benjamin S. Wilfond, Karen H. Rothenberg, Elizabeth J. Thomson & Caryn Lerman - 1997 - Journal of Law, Medicine and Ethics 25 (4):243-251.
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  29.  6
    Genetic Research Involving Human Biological Materials: A Need to Tailor Current Consent Forms.Sara Chandros Hull, Holly Gooding, Alison P. Klein, Esther Warshauer-Baker, Susan Metosky & Benjamin S. Wilfond - 2004 - IRB: Ethics & Human Research 26 (3):1.
    Direct download  
     
    Export citation  
     
    Bookmark   2 citations  
  30.  15
    A Trial to Test a Novel Approach to Diabetes Prevention.Holly A. Taylor, Christian Morales & Benjamin S. Wilfond - 2017 - American Journal of Bioethics 17 (10):74-75.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  31.  5
    Policy in the Light: Professional Society Guidelines Begin the Ethical Conversations About Screening.Benjamin S. Wilfond - 2009 - American Journal of Bioethics 9 (4):17-19.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  32.  9
    Defining the Scope and Improving the Quality of Clinical Research Ethics Consultation: Response to Open Peer Commentaries About the National Collaborative.Kathryn M. Porter, Marion Danis, Holly A. Taylor, Mildred K. Cho & Benjamin S. Wilfond - 2018 - American Journal of Bioethics 18 (2):13-15.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  33.  12
    Expanded Access for Nusinersen in Patients With Spinal Muscular Atropy: Negotiating Limited Data, Limited Alternative Treatments, and Limited Hospital Resources.Benjamin S. Wilfond, Christian Morales & Holly A. Taylor - 2017 - American Journal of Bioethics 17 (10):66-67.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  34.  8
    The Emergence of Clinical Research Ethics Consultation: Insights From a National Collaborative.Kathryn M. Porter, Marion Danis, Holly A. Taylor, Mildred K. Cho & Benjamin S. Wilfond - 2018 - American Journal of Bioethics 18 (1):39-45.
    The increasing complexity of human subjects research and its oversight has prompted researchers, as well as institutional review boards, to have a forum in which to discuss challenging or novel ethical issues not fully addressed by regulations. Research ethics consultation services provide such a forum. In this article, we rely on the experiences of a national Research Ethics Consultation Collaborative that collected more than 350 research ethics consultations in a repository and published 18 challenging cases with accompanying ethical commentaries to (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  35.  39
    The Ethics of Disclosing to Research Subjects the Availability of Off-Label Marketed Drugs.Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond - 2014 - American Journal of Bioethics 14 (4):51-51.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  36.  13
    The Invisible Hand in Clinical Research: The Study Coordinator's Critical Role in Human Subjects Protection.Arlene M. Davis, Sara Chandros Hull, Christine Grady, Benjamin S. Wilfond & Gail E. Henderson - 2002 - Journal of Law, Medicine and Ethics 30 (3):411-419.
  37.  8
    Nonbeneficial Research with Individuals Who Cannot Consent: Is It Ethically Better to Enroll Healthy or Affected Individuals?David Wendler, Seema Shah, Amy Whittle & Benjamin S. Wilfond - 2002 - IRB: Ethics & Human Research 25 (4):1-4.
    Direct download  
     
    Export citation  
     
    Bookmark   1 citation  
  38.  26
    Challenging Cases in Research Ethics.Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond - 2015 - American Journal of Bioethics 15 (4):75-75.
  39.  15
    What We Should Learn About Communication From the Placebo Effect.Gregory S. Loeben & Benjamin S. Wilfond - 1998 - Ethics and Behavior 8 (1):95 – 98.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  40.  7
    Attending to the Interrelatedness of the Functions of Consent.Benjamin S. Wilfond & Stephanie A. Kraft - 2017 - American Journal of Bioethics 17 (12):12-13.
    Direct download (6 more)  
     
    Export citation  
     
    Bookmark  
  41.  15
    When a Clinical Trial Is the Only Option.Holly A. Taylor, Christian Morales & Benjamin S. Wilfond - 2016 - American Journal of Bioethics 16 (10):67-68.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  42.  20
    Adolescent Research Participants' Descriptions of Medical Research.Christine Grady, Isabella Nogues, Lori Wiener, Benjamin S. Wilfond & David Wendler - 2016 - Ajob Empirical Bioethics 7 (1):1-7.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  43.  18
    Lethal.Tracy K. Koogler & Benjamin S. Wilfond - forthcoming - Hastings Center Report.
    Direct download  
     
    Export citation  
     
    Bookmark  
  44.  14
    Research Recruitment of Adult Survivors of Neonatal Infections: Is There a Role for Parental Consent?Ann J. Melvin, Kathleen M. Mohan, Anna Wald, Kathryn Porter & Benjamin S. Wilfond - 2015 - American Journal of Bioethics 15 (10):58-59.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  45.  12
    Natural Settings Trials — Improving the Introduction of Clinical Genetic Tests.Carol L. Freund, Ellen W. Clayton & Benjamin S. Wilfond - 2004 - Journal of Law, Medicine and Ethics 32 (1):106-110.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  46.  14
    Protecting Research Subject Welfare in Preventive Trials for Autosomal Dominant Alzheimer's Disease.Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond - 2015 - American Journal of Bioethics 15 (4):83-84.
  47.  12
    The Ethics of Contacting Family Members of a Subject in a Genetic Research Study to Return Results for an Autosomal Dominant Syndrome.Holly A. Taylor & Benjamin S. Wilfond - 2013 - American Journal of Bioethics 13 (10):61 - 61.
    This case explores the ethical landscape around recontacting a subject's relatives to return genetic research results when the informed consent form signed by the original cohort of subjects is silent on whether investigators may share new information with the research subject's family. As a result of rapid advances in genetic technology, methods to identify genetic markers can mature during the life course of a study. In this case, the investigators identified the genetic mutation responsible for the disorder after a number (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  48.  8
    Studying the Role of Financial Incentives to Promote Hepatitis B Vaccination in a Community Clinic.Benjamin S. Wilfond, Christian Morales & Holly A. Taylor - 2016 - American Journal of Bioethics 16 (10):75-76.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  49.  11
    Natural Settings Trials ? Improving the Introduction of Clinical Genetic Tests.Carol L. Freund, Ellen W. Clayton & Benjamin S. Wilfond - 2004 - Journal of Law, Medicine and Ethics 32 (1):106-110.
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark  
  50.  10
    Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.Susan M. Wolf, Rebecca Branum, Barbara A. Koenig, Gloria M. Petersen, Susan A. Berry, Laura M. Beskow, Mary B. Daly, Conrad V. Fernandez, Robert C. Green, Bonnie S. LeRoy, Noralane M. Lindor, P. Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness & Benjamin S. Wilfond - 2015 - Journal of Law, Medicine and Ethics 43 (3):440-463.
    Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
1 — 50 / 73