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      An Empirical Assessment of the Short Term Impacts of a Reading of Deborah Zoe Laufer’s Drama Informed Consent on Attitudes and Intentions to Participate in Genetic Research

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          Abstract

          Objective:

          This study assessed the short-term impact of the play “Informed Consent” by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the Havasupai Tribe for diabetes research in 1989) on perceptions of trust, willingness to donate biospecimens, attitudes toward harm and privacy among the medical and undergraduate students, faculty and the public in the intermountain west.

          Methods:

          Surveys were administered before and after a staged reading of the play by professional actors. Survey items included the short form Trust in Medical Researchers, and single item questions about group identity, ethics of genetic testing in children, and willingness to donate biospecimens. In addition, respondents were given the option to answer open-ended questions through email.

          Results:

          Out of the 481 who attended the play, 421 completed both the pre and post surveys, and 166 participants completed open-ended questions online approximately one week after the play. Across all participants, there were significant declines for Trust in Medical Researchers and for the survey item “is it ethical for investigators to test children for adult onset diseases,” (p < 0.001 for both) following the play. There was a significant increase in agreement to improve group identity protections (p < 0.001) and no differences on willingness to donate biospecimens to research (p = 0.777). Qualitative data provided extensive contextual data supporting these perspectives.

          Discussion:

          This is one of the first studies to document short-term impacts of a theatrical performance on both attitudes and behavioral intentions toward research ethics and clinical research participation. Future research should continue to explore the impact of theatrical performances among public and investigators on the ethical issues and complexities in clinical research.

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          Author and article information

          Journal
          101631047
          42496
          AJOB Empir Bioeth
          AJOB Empir Bioeth
          AJOB empirical bioethics
          2329-4515
          2329-4523
          5 August 2018
          06 April 2018
          Apr-Jun 2018
          15 August 2018
          : 9
          : 2
          : 69-76
          Affiliations
          University of Utah, Salt Lake City, Utah 84112
          Author notes
          [*]

          UtahPresents, Salt Lake City, Utah 84112

          [**]

          University of Texas A&M, College Station, Texas

          Erin Johnson made substantial contributions to the conception of the work, acquisition of the data drafting and revising it for critically for important intellectual content and give final approval of the version to be published.

          Jeffrey Botkin made substantial contributions to the conception of the work, revising it for critically for important intellectual cement and give final approval of the version to be published.

          Sydney Cheek-O’DonneH made substantial contributions to the conception of the work, drafting and revising it for critically for important intellectual content and give final approval of the version to be published.

          Bob Wong made substantial contributions to the conception of the work, acquisition of the date, analysis and interpretation of the data, revising it for critically for important intellectual content and give final approval of the version to be published.

          Gretchen A. Case made substantial contributions to the conception of the work, drafting and revising it for critically for important intellectual content and give final approval of the vision to be published.

          Trent Matheson made substantial contributions to the conception of the work, acquisition of the data, analysis and interpretation of the data, revising it for critically for important intellectual content and give final approval of the version to be published.

          Alena Wilson made substantial contributions to the conception of the work, acquisition of the data drafting and revising it for critically for important intellectual content and give final approval of the version to be published.

          Nicole Robinson made substantial contributions to the conception of the work, revising it for critically for important intellectual content and give final approval of the version to be published.

          Jared Rawlings made substantial contributions to the conception of the work, analysis and interpretation of the data revising it for critically for important intellectual content and give final approval of the version to be published.

          Brooke Horejsi made substantial contributions to the conception of the work, drafting and revising it for critically for important intellectual content and give final approval of the version to be published.

          Ana Maria Lopez made substantial contributions to the conception of the work, revising it for critically for important intellectual content and give final approval of the version to be published.

          Carrie Byington made substantial contributions to the conception of the work, revising it for critically for important intellectual content and give final approval of the version to be published.

          Corresponding Author: Erin Rothwell, PhD, University of Utah, 10 South 2000 East, Salt Lake City, Utah 84112, erin.rothwell@ 123456nurs.utah.edu
          AUTHOR CONTRIBUTIONS: Erin Rothwell made substantial contributions to the conception of the work, acquisition of the data, analysis and interpretation of the data, drafting or revising it for critically for important: intellectual content and give final approval of the version to be published.
          Article
          PMC6092928 PMC6092928 6092928 nihpa1502153
          10.1080/23294515.2018.1449771
          6092928
          29513089
          Categories
          Article

          biospecimens, theater, medical education, play, arts, bioethics

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