Evidence map›Paper›PMID 29513089›Full record

ArticleAJOB empirical bioethics

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.

Erin Rothwell, Jeffrey R Botkin, Sydney Cheek-O'Donnell, Bob Wong, Gretchen A Case, Erin Johnson, Trent Matheson, Alena Wilson, Nicole R Robinson, Jared Rawlings and 3 more

Abstract read
In one paragraph

Article in AJOB empirical bioethics. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

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0citing papers in PubMed
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1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

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Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

0 citing papers in PubMed.

No citing paper in PubMed yet.

4 · The record

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PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

13 authors.

Erin Rothwella University of Utah , Salt Lake City , Utah , USA.
Jeffrey R Botkina University of Utah , Salt Lake City , Utah , USA.
Sydney Cheek-O'Donnella University of Utah , Salt Lake City , Utah , USA.
Bob Wonga University of Utah , Salt Lake City , Utah , USA.
Gretchen A Casea University of Utah , Salt Lake City , Utah , USA.
Erin Johnsona University of Utah , Salt Lake City , Utah , USA.
Trent Mathesona University of Utah , Salt Lake City , Utah , USA.
Alena Wilsona University of Utah , Salt Lake City , Utah , USA.
Nicole R Robinsona University of Utah , Salt Lake City , Utah , USA.
Jared Rawlingsa University of Utah , Salt Lake City , Utah , USA.
Brooke Horejsib UtahPresents , Salt Lake City , Utah , USA.
Ana Maria Lopeza University of Utah , Salt Lake City , Utah , USA.
Carrie L Byingtonc University of Texas A&M , College Station , Texas , USA.

Funding

Utah Center for Clinical and Translational ScienceUL1TR002538 · NCATS · UNIVERSITY OF UTAH · PI HESS, RACHEL, MAJERSIK, JENNIFER JUHL · 2018 to 2022
$26.0M
University of Utah Center for Clinical and Translational ScienceUL1TR001067 · NCATS · UNIVERSITY OF UTAH · PI DERE, WILLARD H., HESS, RACHEL · 2013 to 2017
$19.8M
Utah Center of Excellence in ELSI Research: UCEERRM1HG009037 · NHGRI · UNIVERSITY OF UTAH · PI ROTHWELL, ERIN, TABERY, JAMES · 2016 to 2024
$8.0M
NCATS NIH HHS UL1 TR001067NCATS NIH HHS UL1 TR002538NHGRI NIH HHS RM1 HG009037
6 · The paper itself

Abstract

objectiveThis 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.

methodsSurveys 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.

resultsOut 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.

Indexed as

DramaLiterature, ModernBiomedical ResearchEthics, ResearchGenetic ResearchHealth Knowledge, Attitudes, PracticeHumansInformed Consentartsbiospecimensmedical educationmedical humanitiesplaytheater

Identifiers

PMID29513089
PMCPMC6092928

What OpenQuestion holds

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Registered trials

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.