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

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
• neurosurgery
• deep brain stimulation
• participant perspectives
• informed consent
• translational misconception 

Acknowledgments

The authors would like to acknowledge the attendees at the 2021 International Neuroethics Society Meeting, the 2022 NIH BRAIN Initiative Neuroethics Working Group Meeting, and the UCLA TNT Faculty Seminar series for insightful discussion of the data presented in this paper. Special thanks to Michelle Pham, who assisted with data collection, two anonymous reviewers for this journal, and the participants who offered their time.

Disclosure statement

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.

Ethical approval

This ethics study was approved by the Institutional Review Board at the University of California, Los Angeles.

Additional information

Funding

This project was funded by NIH BRAIN Initiative grant RF1MH121373.