11 found
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  1.  30
    The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research.John M. Conley, R. Jean Cadigan, Arlene M. Davis, Eric T. Juengst, Kriste Kuczynski, Rami Major, Hayley Stancil, Julio Villa-Palomino, Margaret Waltz & Gail E. Henderson - 2023 - American Journal of Bioethics 23 (7):9-16.
    This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements (...)
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  2.  22
    A Belmont Reboot: Building a Normative Foundation for Human Research in the 21st Century.Kyle B. Brothers, Suzanne M. Rivera, R. Jean Cadigan, Richard R. Sharp & Aaron J. Goldenberg - 2019 - Journal of Law, Medicine and Ethics 47 (1):165-172.
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  3.  32
    A Trade Secret Model for Genomic Biobanking.John M. Conley, Robert Mitchell, R. Jean Cadigan, Arlene M. Davis, Allison W. Dobson & Ryan Q. Gladden - 2012 - Journal of Law, Medicine and Ethics 40 (3):612-629.
    The current ethical norms of genomic biobanking creating and maintaining large repositories of human DNA and/or associated data for biomedical research have generated criticism from every angle, at both the practical and theoretical levels. The traditional research model has involved investigators seeking biospecimens for specific purposes that they can describe and disclose to prospective subjects, from whom they can then seek informed consent. In the case of many biobanks, however, the institution that collects and maintains the biospecimens may not itself (...)
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  4.  44
    Modernizing Research Regulations Is Not Enough: It's Time to Think Outside the Regulatory Box.Suzanne M. Rivera, Kyle B. Brothers, R. Jean Cadigan, Heather L. Harrell, Mark A. Rothstein, Richard R. Sharp & Aaron J. Goldenberg - 2017 - American Journal of Bioethics 17 (7):1-3.
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  5.  9
    Perils of the Hidden Curriculum: Emotional Labor and “Bad” Pediatric Proxies.Arlene Davis, Paul Ossman, Benny Joyner, R. Jean Cadigan & Margaret Waltz - 2019 - Journal of Clinical Ethics 30 (2):154-162.
    Today’s medical training environment exposes medical trainees to many aspects of what has been called “the hidden curriculum.” In this article, we examine the relationship between two aspects of the hidden curriculum, the performance of emotional labor and the characterization of patients and proxies as “bad,” by analyzing clinical ethics discussions with resident trainees at an academic medical center. We argue that clinicians’ characterization of certain patients and proxies as “bad,” when they are not, can take an unnecessary toll on (...)
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  6.  19
    The Slippery Slope of Prenatal Testing for Social Traits.Courtney Canter, Kathleen Foley, Shawneequa L. Callier, Karen M. Meagher, Margaret Waltz, Aurora Washington, R. Jean Cadigan, Anya E. R. Prince & the Beyond the Medical R01 Research Team - 2023 - American Journal of Bioethics 23 (3):36-38.
    Bowman-Smart et al. (2023) argue for a framework to examine the ethical issues associated with genetic screening for non-medical traits in the context of noninvasive prenatal testing (NIPT). Such s...
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  7.  18
    Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?Anya E. R. Prince, John M. Conley, Arlene M. Davis, Gabriel Lázaro-Muñoz & R. Jean Cadigan - 2015 - Journal of Law, Medicine and Ethics 43 (4):827-842.
    The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly (...)
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  8.  21
    “If It’s Ethical During a Pandemic…”: Lessons from COVID-19 for Post-Pandemic Biobanking.Kyle B. Brothers, Aaron J. Goldenberg & R. Jean Cadigan - 2021 - American Journal of Bioethics 21 (12):34-36.
    The COVID-19 pandemic has resulted in widespread disruption of the typical way of doing things. In nearly every industry, responses to the pandemic have brought about departures from standard opera...
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  9.  23
    Scientific Social Responsibility: Lessons From the Corporate Social Responsibility Movement.John M. Conley, Gabriel Lázaro-Muñoz, Anya E. R. Prince, Arlene M. Davis & R. Jean Cadigan - 2015 - American Journal of Bioethics 15 (12):64-66.
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  10.  24
    Automatic Placement of Genomic Research Results in Medical Records: Do Researchers Have a Duty? Should Participants Have a Choice?Anya E. R. Prince, John M. Conley, Arlene M. Davis, Gabriel Lázaro-Muñoz & R. Jean Cadigan - 2015 - Journal of Law, Medicine and Ethics 43 (4):827-842.
    The growing practice of returning individual results to research participants has revealed a variety of interpretations of the multiple and sometimes conflicting duties that researchers may owe to participants. One particularly difficult question is the nature and extent of a researcher’s duty to facilitate a participant’s follow-up clinical care by placing research results in the participant’s medical record. The question is especially difficult in the context of genomic research. Some recent genomic research studies — enrolling patients as participants — boldly (...)
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  11.  16
    Exploring the Emotional Labor of Medical Trainees in the Setting of Ethics Education.Margaret Waltz, R. Jean Cadigan & Arlene M. Davis - 2019 - American Journal of Bioethics 19 (12):65-66.
    Julie Childers and Bob Arnold’s (2019) article, “The Inner Lives of Doctors: Physician Emotion in the Care of the Seriously Ill,” uses Kübler-Ross’s influential work on death and dying to remind us...
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