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. 2023 Apr-Jun;14(2):111-124.
doi: 10.1080/23294515.2022.2123869. Epub 2022 Sep 22.

"They were already inside my head to begin with": Trust, Translational Misconception, and Intraoperative Brain Research

Ally Peabody Smith  1 , Lauren Taiclet  1 , Hamasa Ebadi  2 , Lilyana Levy  1 , Megan Weber  3 , Eugene M Caruso  3 , Nader Pouratian  2 , Ashley Feinsinger  1
Affiliations

"They were already inside my head to begin with": Trust, Translational Misconception, and Intraoperative Brain Research

Ally Peabody Smith et al. AJOB Empir Bioeth. 2023 Apr-Jun.

Abstract

Background: Patients undergoing invasive neurosurgical procedures offer researchers unique opportunities to study the brain. Deep brain stimulation patients, for example, may participate in research during the surgical implantation of the stimulator device. Although this research raises many ethical concerns, little attention has been paid to basic studies, which offer no therapeutic benefits, and the value of patient-participant perspectives.Methods: Semi-structured interviews were conducted with fourteen individuals across two studies who participated in basic intraoperative research during their deep brain stimulator surgery. Interviews explored interpretations of risks and benefits, enrollment motivations, and experiences of participating in awake brain research. Reflexive thematic analysis was conducted.Results: Seven themes were identified from participant narratives, including robust attitudes of trust, high valuations of basic science research, impacts of the surgical context, and mixed experiences of participation.Conclusion: We argue that these narratives raise the potential for a translational misconception and motivate intraoperative re-consent procedures.

Keywords: Research ethics; deep brain stimulation; informed consent; neurosurgery; participant perspectives; translational misconception.

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Conflict of interest statement

Conflicts of Interest: The authors do not have any financial conflicts of interest with this project. NP is a consultant for Abbot Laboratories, and NP, AF, and EC receive grant support from NIH BRAIN Initiative RF1MH121373. Funders had no role in the development of this study.

Figures

Figure 1:
Figure 1:
Using P11 and P14’s narratives, this figure shows representative examples of the range of experiences and emotions within subjects.
See this image and copyright information in PMC

References

    1. Appelbaum Paul S., Anatchkova Milena, Albert Karen, Dunn Laura B., and Lidz Charles W. “Therapeutic Misconception in Research Subjects: Development and Validation of a Measure.” Clinical Trials 9, no. 6 (December 2012): 748–61. 10.1177/1740774512456455. - DOI - PMC - PubMed
    1. Braun Virginia &Clarke Victoria. “One size fits all? What counts as quality practice in (reflexive) thematic analysis?” Qualitative Research in Psychology 18:, no. 3 (2021): 328–352. 10.1080/14780887.2020.1769238 - DOI
    1. —. “Reflecting on Reflexive Thematic Analysis.” Qualitative Research in Sport, Exercise and Health 11, no. 4 (August 8, 2019): 589–97. 10.1080/2159676X.2019.1628806. - DOI
    1. —. “Thematic Analysis.” In APA Handbook of Research Methods in Psychology, Vol 2: Research Designs: Quantitative, Qualitative, Neuropsychological, and Biological, 57–71. APA Handbooks in Psychology®. Washington, DC, US: American Psychological Association, (2012). 10.1037/13620-004. - DOI
    1. —. “Using Thematic Analysis in Psychology.” Qualitative Research in Psychology 3, no. 2 (2006): 77–101. 10.1191/1478088706qp063oa. - DOI

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