47 found
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  1.  2
    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). Broad Consent for Research With Biological Samples: Workshop Conclusions. 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 (...)
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  2.  17
    Vardit Ravitsky & Benjamin S. Wilfond (2006). Disclosing Individual Genetic Results to Research Participants. 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 (...)
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  3.  5
    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). Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations. Journal of Law, Medicine & 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 (...)
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  4. Benjamin S. Wilfond (2013). Quality Improvement Ethics: Lessons From the SUPPORT Study. 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 (...)
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  5. 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). Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations. Journal of Law, Medicine and Ethics 36 (2):219-248.
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  6.  3
    Sara Chandros Hull, Karen Glanz, Alana Steffen & Benjamin S. Wilfond (forthcoming). Recruitment Approaches for Family Studies: Attitudes of Index Patients and Their Relatives. IRB: Ethics & Human Research.
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  7. Benjamin S. Wilfond & Katherine J. Carpenter (2008). Incidental Findings in Pediatric Research. Journal of Law, Medicine & 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 (...)
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  8.  31
    Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2014). The Ethics of Disclosing to Research Subjects the Availability of Off-Label Marketed Drugs. American Journal of Bioethics 14 (4):51-51.
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  9.  5
    Benjamin S. Wilfond & Vardit Ravitsky (2005). On the Proliferation of Bioethics Sub-Disciplines: Do We Really Need "Genethics" and "Neuroethics"? American Journal of Bioethics 5 (2):20 – 21.
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  10.  1
    Sara Chandros Hull, Holly Gooding, Alison P. Klein, Esther Warshauer-Baker, Susan Metosky & Benjamin S. Wilfond (2004). Genetic Research Involving Human Biological Materials: A Need to Tailor Current Consent Forms. IRB: Ethics & Human Research 26 (3):1.
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  11.  11
    Douglas J. Opel & Benjamin S. Wilfond (2009). Cosmetic Surgery in Children with Cognitive Disabilities: Who Benefits? Who Decides? Hastings Center Report 39 (1):19-21.
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  12.  1
    Benjamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski & Sara Goering (2010). Navigating Growth Attenuation in Children with Profound Disabilities. Hastings Center Report 40 (6):27-40.
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  13.  3
    Douglas J. Opel, Dena Brownstein, Douglas S. Diekema, Benjamin S. Wilfond & Robert A. Pearlman (2009). Integrating Ethics and Patient Safety: The Role of Clinical Ethics in Quality Improvment (Vol 20, Pg 220, 2009). Journal of Clinical Ethics 20 (4):370-370.
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  14.  5
    Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2015). Protecting Research Subject Welfare in Preventive Trials for Autosomal Dominant Alzheimer's Disease. American Journal of Bioethics 15 (4):83-84.
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  15.  2
    Christine Grady, Isabella Nogues, Lori Wiener, Benjamin S. Wilfond & David Wendler (2016). Adolescent Research Participants' Descriptions of Medical Research. Ajob Empirical Bioethics 7 (1):1-7.
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  16.  8
    Benjamin S. Wilfond, Karen H. Rothenberg, Elizabeth J. Thomson & Caryn Lerman (1997). Cancer Genetic Susceptibility Testing: Ethical and Policy Implications for Future Research and Clinical Practice. Journal of Law, Medicine & Ethics 25 (4):243-251.
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  17. Benjamin S. Wilfond & Katherine J. Carpenter (2008). Incidental Findings in Pediatric Research. Journal of Law, Medicine and Ethics 36 (2):332-340.
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  18.  1
    Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2015). Recontact and Recruitment of Young Adults Previously Enrolled in Neonatal Herpes Simplex Virus Research. American Journal of Bioethics 15 (10):56-57.
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  19.  10
    Benjamin S. Wilfond, Paul Steven Miller, Carolyn Korfiatis, Douglas S. Diekema, Denise M. Dudzinski, Sara Goering & The Seattle Growth Attenuation and Ethics Working Group (forthcoming). Navigating Growth Attenuation in Children with Profound Disabilities: Children's Interests, Family Decision-Making, and Community Concerns. Hastings Center Report 40 (6):27-40.
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  20.  7
    Arlene M. Davis, Sara Chandros Hull, Christine Grady, Benjamin S. Wilfond & Gail E. Henderson (2002). The Invisible Hand in Clinical Research: The Study Coordinator's Critical Role in Human Subjects Protection. Journal of Law, Medicine & Ethics 30 (3):411-419.
  21.  1
    David Wendler, Seema Shah, Amy Whittle & Benjamin S. Wilfond (2002). Nonbeneficial Research with Individuals Who Cannot Consent: Is It Ethically Better to Enroll Healthy or Affected Individuals? IRB: Ethics & Human Research 25 (4):1-4.
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  22.  5
    Tracy K. Koogler & Benjamin S. Wilfond (forthcoming). Lethal. Hastings Center Report.
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  23.  2
    Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2015). Challenging Cases in Research Ethics. American Journal of Bioethics 15 (4):75-75.
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  24.  2
    Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2014). Ethical Implications of Social Media in Health Care Research. American Journal of Bioethics 14 (10):58-59.
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  25.  1
    Benjamin S. Wilfond & Diane Baker (1995). Genetic Counseling, Non-Directiveness, and Clients' Values: Is What Clients Say, What They Mean? Journal of Clinical Ethics 6 (2):180.
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  26.  12
    Benjamin S. Wilfond (2008). The Genetic Information Nondiscrimination Act: Fear Factor or Fantasy Island? Hastings Center Report 38 (6):11-12.
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  27.  1
    Anita Shah, Kathryn Porter, Sandra Juul & Benjamin S. Wilfond (2015). Precluding Consent by Clinicians Who Are Both the Attending and the Investigator: An Outdated Shibboleth? American Journal of Bioethics 15 (4):80-82.
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  28.  1
    Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2015). Navigating Parental Permission for Neonatal Research. American Journal of Bioethics 15 (4):76-76.
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  29.  10
    Gregory S. Loeben & Benjamin S. Wilfond (1998). What We Should Learn About Communication From the Placebo Effect. Ethics and Behavior 8 (1):95 – 98.
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  30.  2
    Tracy K. Koogler, Benjamin S. Wilfond & Lainie Friedman Ross (2003). Lethal Language, Lethal Decisions. Hastings Center Report 33 (2):37-41.
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  31.  1
    Laura M. Beskow, Christine Grady, Ana S. Iltis, John Z. Sadler & Benjamin S. Wilfond (2009). Points to Consider: The Research Ethics Consultation Service and the IRB. IRB: Ethics & Human Research 31 (6):1.
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  32. Arlene M. Davis, Sara Chandros Hull, Christine Grady, Benjamin S. Wilfond & Gail E. Henderson (2002). The Invisible Hand in Clinical Research: The Study Coordinator's Critical Role in Human Subjects Protection. Journal of Law, Medicine and Ethics 30 (3):411-419.
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  33. Carol L. Freund, Ellen W. Clayton & Benjamin S. Wilfond (2004). Natural Settings Trials ? Improving the Introduction of Clinical Genetic Tests. Journal of Law, Medicine & Ethics 32 (1):106-110.
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  34. Carol L. Freund, Ellen W. Clayton & Benjamin S. Wilfond (2004). Natural Settings Trials? Improving the Introduction of Clinical Genetic Tests. Journal of Law, Medicine and Ethics 32 (1):106-110.
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  35. Ann J. Melvin, Kathleen M. Mohan, Anna Wald, Kathryn Porter & Benjamin S. Wilfond (2015). Research Recruitment of Adult Survivors of Neonatal Infections: Is There a Role for Parental Consent? American Journal of Bioethics 15 (10):58-59.
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  36. Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2013). Challenging Cases in Research Ethics. American Journal of Bioethics 13 (10):60 - 60.
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  37. Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2014). Challenging Cases in Research Ethics. American Journal of Bioethics 14 (10):49-49.
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  38. Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2014). Ethics of Continuing to Provide a Drug on an Open-Label Extension Study for an “Unapproved Indication”. American Journal of Bioethics 14 (4):56-56.
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  39. Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2015). Is It Ethical to Enroll Cognitively Impaired Adults in Research That Is More Than Minimal Risk With No Prospect of Benefit? American Journal of Bioethics 15 (10):64-65.
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  40. Holly A. Taylor & Benjamin S. Wilfond (2013). Managing Disclosure of Research Misconduct by a Graduate Student to a University Mental Health Professional During a Clinical Counseling Session. American Journal of Bioethics 13 (10):68 - 68.
    This case looks at the question of how to consider obligations of confidentiality by a mental health professional who works for an institution and learns that a student has been using a drug intended for an animal research project. Dr. Paul Appelbaum, MD, a psychiatrist at Columbia University, examines the issue of the limits of confidentiality. Nicholas Steneck, PhD, a scholar in research misconduct at the University of Michigan, explores the obligations to report research misconduct. (...)
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  41. Holly A. Taylor & Benjamin S. Wilfond (2013). The Ethics of Contacting Family Members of a Subject in a Genetic Research Study to Return Results for an Autosomal Dominant Syndrome. 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 (...)
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  42. Holly A. Taylor, Ellen Kuwana & Benjamin S. Wilfond (2014). The Obligations to Report Statutory Sexual Abuse Disclosed in a Research Study. American Journal of Bioethics 14 (10):50-50.
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  43. Benjamin S. Wilfond, Karen H. Rothenberg, Elizabeth J. Thomson & Caryn Lerman (1997). Cancer Genetic Susceptibility Testing: Ethical and Policy Implications for Future Research and Clinical Practice. Journal of Law, Medicine and Ethics 25 (4):243-251.
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  44. Benjamin S. Wilfond, Conrad V. Fernandez & Robert C. Green (2015). Disclosing Secondary Findings From Pediatric Sequencing to Families: Considering the “Benefit to Families”. Journal of Law, Medicine and Ethics 43 (3):552-558.
    Secondary findings for adult-onset diseases in pediatric clinical sequencing can benefit parents or other family members. In the absence of data showing harm, it is ethically reasonable for parents to request such information, because in other types of medical decision-making, they are often given discretion unless their decisions clearly harm the child. Some parents might not want this information because it could distract them from focusing on the child's underlying condition that prompted sequencing. Collecting family impact data may improve future (...)
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  45. Benjamin S. Wilfond (1995). Screening Policy for Cystic Fibrosis: The Role of Evidence. Hastings Center Report 25 (3):S21.
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  46. Benjamin S. Wilfond (1995). The Role of Evidence. Hastings Center Report 25 (3):21-23.
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  47. 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). Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations. 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.
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