Clinical Trial

. 2023 Jul-Aug;16(4):990-998.

doi: 10.1016/j.brs.2023.06.007. Epub 2023 Jun 15.

Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial

Amanda R Merner¹, Kristin Kostick-Quenet², Tiffany A Campbell¹, Michelle T Pham³, Clarissa E Sanchez², Laura Torgerson², Jill Robinson², Stacey Pereira², Simon Outram⁴, Barbara A Koenig⁴, Philip A Starr⁵, Aysegul Gunduz⁶, Kelly D Foote⁷, Michael S Okun⁷, Wayne Goodman⁸, Amy L McGuire², Peter Zuk¹, Gabriel Lázaro-Muñoz⁹

Affiliations

¹ Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States.
² Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States.
³ Center for Bioethics and Social Justice, Michigan State University, East Fee Hall, 965 Wilson Road Rm A-126, East Lansing, MI, 48824, United States.
⁴ Program in Bioethics, University of California, San Francisco, 490 Illinois Street, San Francisco, CA, 94143, United States.
⁵ Department of Neurological Surgery, University of California, San Francisco, 400 Parnassus Avenue, San Francisco, CA, 94143, United States.
⁶ Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States; Department of Biomedical Engineering, University of Florida, 1275 Center Drive, Biomedical Science Building, JG283, Gainesville, FL, 32611, United States.
⁷ Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States.
⁸ Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine, 1977 Butler Blvd Suite E4.100, Houston, TX, 77030, United States.
⁹ Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States; Department of Psychiatry, Massachusetts General Hospital, 55 Fruit Street, Boston, MA, 02114, United States. Electronic address: glazaro@hms.harvard.edu.

PMID: 37330169
PMCID: PMC10529988
DOI: 10.1016/j.brs.2023.06.007

Clinical Trial

Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial

Amanda R Merner et al. Brain Stimul. 2023 Jul-Aug.

. 2023 Jul-Aug;16(4):990-998.

doi: 10.1016/j.brs.2023.06.007. Epub 2023 Jun 15.

Authors

Affiliations

¹ Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States.
² Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Suite 326D, Houston, TX, 77030, United States.
³ Center for Bioethics and Social Justice, Michigan State University, East Fee Hall, 965 Wilson Road Rm A-126, East Lansing, MI, 48824, United States.
⁴ Program in Bioethics, University of California, San Francisco, 490 Illinois Street, San Francisco, CA, 94143, United States.
⁵ Department of Neurological Surgery, University of California, San Francisco, 400 Parnassus Avenue, San Francisco, CA, 94143, United States.
⁶ Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States; Department of Biomedical Engineering, University of Florida, 1275 Center Drive, Biomedical Science Building, JG283, Gainesville, FL, 32611, United States.
⁷ Norman Fixel Institute for Neurological Diseases, Departments of Neurology and Neurosurgery, University of Florida, 3009 SW Williston Road, Gainesville, FL, 32608, United States.
⁸ Department of Psychiatry and Behavioral Sciences, Baylor College of Medicine, 1977 Butler Blvd Suite E4.100, Houston, TX, 77030, United States.
⁹ Center for Bioethics, Harvard Medical School, 641 Huntington Avenue, Boston, MA, 02115, United States; Department of Psychiatry, Massachusetts General Hospital, 55 Fruit Street, Boston, MA, 02114, United States. Electronic address: glazaro@hms.harvard.edu.

PMID: 37330169
PMCID: PMC10529988
DOI: 10.1016/j.brs.2023.06.007

Abstract

Background: There has been substantial controversy in the neuroethics literature regarding the extent to which deep brain stimulation (DBS) impacts dimensions of personality, mood, and behavior.

Objective/hypothesis: Despite extensive debate in the theoretical literature, there remains a paucity of empirical data available to support or refute claims related to the psychosocial changes following DBS.

Methods: A mixed-methods approach was used to examine the perspectives of patients who underwent DBS regarding changes to their personality, authenticity, autonomy, risk-taking, and overall quality of life.

Results: Patients (n = 21) who were enrolled in adaptive DBS trials for Parkinson's disease, essential tremor, obsessive-compulsive disorder, Tourette's syndrome, or dystonia participated. Qualitative data revealed that participants, in general, reported positive experiences with alterations in what was described as 'personality, mood, and behavior changes.' The majority of participants reported increases in quality of life. No participants reported 'regretting the decision to undergo DBS.'

Conclusion(s): The findings from this patient sample do not support the narrative that DBS results in substantial adverse changes to dimensions of personality, mood, and behavior. Changes reported as "negative" or "undesired" were few in number, and transient in nature.

Keywords: Deep brain stimulation; Ethics; Neuroethics; Neuromodulation; Neurotechnology; Personality.

PubMed Disclaimer

Conflict of interest statement

Declaration of competing interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper.

Cited by

The Potential Harms of Speculative Neuroethics Research.
Merner AR, Kubu CS. Merner AR, et al. AJOB Neurosci. 2023 Oct-Dec;14(4):418-421. doi: 10.1080/21507740.2023.2257170. Epub 2023 Oct 19. AJOB Neurosci. 2023. PMID: 37856347 Free PMC article. No abstract available.
Ethical considerations for integrating multimodal computer perception and neurotechnology.
Hurley ME, Sonig A, Herrington J, Storch EA, Lázaro-Muñoz G, Blumenthal-Barby J, Kostick-Quenet K. Hurley ME, et al. Front Hum Neurosci. 2024 Feb 16;18:1332451. doi: 10.3389/fnhum.2024.1332451. eCollection 2024. Front Hum Neurosci. 2024. PMID: 38435745 Free PMC article.
Deep brain stimulation and Parkinson disease: a bibliometric and visual analysis (1993-2023).
Abdallat M, Abumurad SK, Tarazi A, Ammar A, Zyoud MA, AlMomani D. Abdallat M, et al. Neurosurg Rev. 2025 Jan 7;48(1):24. doi: 10.1007/s10143-025-03178-w. Neurosurg Rev. 2025. PMID: 39762644
The range and reach of qualitative research in neurosurgery: A scoping review.
Whiffin CJ, O Khu KJ, Smith BG, Kuhn I, Selveindran SM, Hobbs L, Davoody S, Docrat Y, Mantle O, Nath U, Onbaşı L, Tumpa S, Esene IN, Mee H, Gracey F, Nagraj S, Bashford T, Kolias AG, Hutchinson PJ. Whiffin CJ, et al. PLoS One. 2025 Aug 21;20(8):e0330770. doi: 10.1371/journal.pone.0330770. eCollection 2025. PLoS One. 2025. PMID: 40839612 Free PMC article.
Identity Theft, Deep Brain Stimulation, and the Primacy of Post-trial Obligations.
Fins JJ, Merner AR, Wright MS, Lázaro-Muñoz G. Fins JJ, et al. Hastings Cent Rep. 2024 Jan;54(1):34-41. doi: 10.1002/hast.1567. Hastings Cent Rep. 2024. PMID: 38390681 Free PMC article.

See all "Cited by" articles

References

1. Volkmann J, Allert N, Voges J, Weiss PH, Freund HJ, & Sturm V (2001). Safety and efficacy of pallidal or subthalamic nucleus stimulation in advanced PD. Neurology, 56(4), 548–551. - PubMed
1. Baizabal-Carvallo JF, Kagnoff MN, Jimenez-Shahed J, Fekete R, & Jankovic J (2014). The safety and efficacy of thalamic deep brain stimulation in essential tremor: 10 years and beyond. Journal of Neurology, Neurosurgery & Psychiatry, 85(5), 567–572. - PubMed
1. Krause P, Völzmann S, Ewert S, Kupsch A, Schneider GH, & Kühn AA (2020). Long-term effects of bilateral pallidal deep brain stimulation in dystonia: a follow-up between 8 and 16 years. Journal of Neurology, 267, 1622–1631. - PMC - PubMed
1. Salanova V, Witt T, Worth R, Henry TR, Gross RE, Nazzaro JM, … & SANTE Study Group. (2015). Long-term efficacy and safety of thalamic stimulation for drug-resistant partial epilepsy. Neurology, 84(10), 1017–1025. - PMC - PubMed
1. Cruz S, Gutiérrez-Rojas L, González-Domenech P, Díaz-Atienza F, Martínez-Ortega JM, & Jiménez-Fernández S (2022). Deep brain stimulation in obsessive-compulsive disorder: Results from meta-analysis. Psychiatry Research, 317, 114869. - PubMed

Publication types

Actions
Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions

Grants and funding

LinkOut - more resources

Full Text Sources
Medical
- MedlinePlus Health Information

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial

Affiliations

Participant perceptions of changes in psychosocial domains following participation in an adaptive deep brain stimulation trial

Authors

Affiliations

Abstract

Conflict of interest statement

Similar articles

Cited by

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Medical

Abstract

Conflict of interest statement

Similar articles

Cited by

References

Publication types

MeSH terms

Related information

Grants and funding

LinkOut - more resources

Full Text Sources

Medical