9 found
Order:
  1.  27
    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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   16 citations  
  2.  31
    Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice.Gabriel Lázaro-Muñoz, John M. Conley, Arlene M. Davis, Marcia Van Riper, Rebecca L. Walker & Eric T. Juengst - 2015 - American Journal of Bioethics 15 (7):3-14.
    Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   14 citations  
  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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  4.  18
    Is Real-Time ELSI Realistic?John M. Conley, Anya E. R. Prince, Arlene M. Davis, Jean Cadigan & Gabriel Lazaro-Munoz - 2020 - AJOB Empirical Bioethics 11 (2):134-144.
    Background: A growing literature has raised—skeptically—the question of whether cutting-edge scientific research can identify and address broader ethical and policy considerations in real time. In genomics, the question is: Can ELSI contribute to genomics in real time, or will it be relegated to its historical role of after-the-fact outsider critique? We address this question against the background of a genomic screening project where we participated as embedded, real-time ELSI researchers and observers, from its initial design through its conclusion.Methods: As part (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  5.  15
    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 (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  6.  6
    Scientists at the bar: the professional world of patent lawyers.John M. Conley & Lynn Mather - 2012 - In Leslie C. Levin & Lynn Mather (eds.), Lawyers in practice: ethical decision making in context. London: University of Chicago Press. pp. 245.
    Direct download  
     
    Export citation  
     
    Bookmark  
  7.  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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  8.  19
    Response to Open Peer Commentaries on “Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice”.Gabriel Lázaro-Muñoz, John M. Conley, Arlene M. Davis, Marcia Van Riper, Rebecca L. Walker & Eric T. Juengst - 2015 - American Journal of Bioethics 15 (12):6-9.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  9.  22
    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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark