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Opportunity Cost or Opportunity Lost: An Empirical Assessment of Ethical Concerns and Attitudes of EEG Neurofeedback Users

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Abstract

Background

Electroencephalography (EEG) neurofeedback is a type of biofeedback that purportedly teaches users how to control their brainwaves. Although neurofeedback is currently offered by thousands of providers worldwide, its provision is contested, as its effectiveness beyond a placebo effect is unproven. While scholars have voiced numerous ethical concerns about neurofeedback—regarding opportunity cost, physical and psychological harms, financial cost, and informed consent—to date these concerns have remained theoretical. This pilot study aimed to provide insights on whether these issues were supported by empirical data from the experiences of neurofeedback users.

Methods

Semi-structured telephone interviews were conducted with individuals who had used EEG neurofeedback for themselves and/or for a child.

Results

The majority of respondents (N = 36) were female (75%), white (92%), and of higher socioeconomic status relative to the U.S. population. Among adult users (n = 33), most (78.8%) resorted to neurofeedback after having tried other therapies, and were satisfied with the treatment (81.8%). The majority paid for neurofeedback out-of-pocket (72.7%) and considered it to be good value for money (84.8%). More than half (57.6%) considered neurofeedback to be a scientifically well-established therapy. However, of those, 78.9% were using neurofeedback for indications not adequately supported by scientific evidence.

Conclusion

Concerns regarding opportunity cost, physical and psychological harms, and financial cost are not substantiated by our findings. Our results partially support concerns regarding insufficient understanding of limitations. This study underlines the disconnect between some of the theoretical concerns raised by scholars regarding the use of non-validated therapies and the lived experiences of users.

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Acknowledgements

We would like to thank all participants in our study and the moderators of the Facebook groups who agreed to give us access.

Funding

This study was supported by the Office of the Director, National Institutes of Health (NIH), under Award Number DP5OD026420.

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Authors and Affiliations

  1. Department of Medical Ethics and Health Policy, University of Pennsylvania, Philadelphia, PA, USA

    Louiza Kalokairinou, Rebekah Choi, Ashwini Nagappan & Anna Wexler

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  1. Louiza Kalokairinou
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Contributions

The study was conceptualized by LK and designed by LK, AN and AW. The interviews were conducted by LK and the data analysis was performed by LK and RC. LK wrote the first draft and all authors revised and approved the final version of the manuscript.

Corresponding author

Correspondence to Louiza Kalokairinou.

Ethics declarations

Ethics Approval and Consent to Participate

This study was carried out in accordance with all relevant ethical and legal standards, including the Declaration of Helsinki. The University of Pennsylvania Institutional Review Board reviewed the protocol of this study in July 2020 and determined that the proposal meets eligibility criteria for IRB review exemption (IRB Protocol: #843651). All participants received an informed consent form via email prior to the interview, which was reviewed verbally before commencing each interview.

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The authors have no competing interests to declare.

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Kalokairinou, L., Choi, R., Nagappan, A. et al. Opportunity Cost or Opportunity Lost: An Empirical Assessment of Ethical Concerns and Attitudes of EEG Neurofeedback Users. Neuroethics 15, 28 (2022). https://doi.org/10.1007/s12152-022-09506-x

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