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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, and 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 e-mail. 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 1 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 < .001 for both) following the play. There was a significant increase in agreement to improve group identity protections (p < .001) and there were no differences on willingness to donate biospecimens to research (p = .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.
Acknowledgments
Special thanks to the wonderful collaboration with UtahPresents.
Conflicts of interest
Carrie Byington owns intellectual property and receives royalties from BioFire Diagnostics. Jeffrey Botkin serves on the Ethics Advisory Board of Illumina, Inc.
Ethical approval
This study was approved by the institutional review board(s) at the University of Utah (IRB: 00096184).
Notes
1 Among the earliest of these is Georg Büchner's unfinished play Woyzeck (1837), which features a doctor who limits his patient to a diet of only peas and then measures his physical decline by testing his urine.
Additional information
Funding
Notes on contributors
Erin Rothwell
Erin Rothwell made substantial contributions to the conception of the work, acquisition of the data, analysis and interpretation of the data, and drafting or revising the article for critically for important intellectual content, and gave final approval of the version to be published.
Jeffrey R. Botkin
Jeffrey Botkin made substantial contributions to the conception of the work and revising it for critically for important intellectual content, and gave final approval of the version to be published.
Sydney Cheek-O'Donnell
Sydney Cheek-O'Donnell made substantial contributions to the conception of the work and drafting and revising it for critically for important intellectual content, and gave final approval of the version to be published.
Bob Wong
Bob Wong made substantial contributions to the conception of the work, acquisition of the data, analysis and interpretation of the data, and revising it for critically for important intellectual content, and gave final approval of the version to be published.
Gretchen A. Case
Gretchen A. Case made substantial contributions to the conception of the work, drafting and revising it for critically for important intellectual content, and gave final approval of the version to be published.
Erin Johnson
Erin Johnson made substantial contributions to the conception of the work, acquisition of the data, and drafting and revising it for critically for important intellectual content, and gave final approval of the version to be published.
Trent Matheson
Trent Matheson made substantial contributions to the conception of the work, acquisition of the data, analysis and interpretation of the data, and revising it for critically for important intellectual content, and gave final approval of the version to be published.
Alena Wilson
Alena Wilson made substantial contributions to the conception of the work, acquisition of the data, and drafting and revising it for critically for important intellectual content, and gave final approval of the version to be published.
Nicole R. Robinson
Nicole Robinson made substantial contributions to the conception of the work, revising it for critically for important intellectual content, and gave final approval of the version to be published.
Jared Rawlings
Jared Rawlings made substantial contributions to the conception of the work, analysis and interpretation of the data, and revising it for critically for important intellectual content, and gave final approval of the version to be published.
Brooke Horejsi
Brooke Horejsi made substantial contributions to the conception of the work, drafting and revising it for critically for important intellectual content, and gave final approval of the version to be published.
Ana Maria Lopez
Ana Maria Lopez made substantial contributions to the conception of the work, revising it for critically for important intellectual content, and gave final approval of the version to be published.
Carrie L. Byington
Carrie Byington made substantial contributions to the conception of the work, revising it for critically for important intellectual content, and gave final approval of the version to be published.