Overview
The field of neuroethics examines the unique ethical questions that arise in working with patients with brain disorders and how the study of neuroscience informs ethics research. The goal of the Pragmatic Clinical Neuroethics research group is to study, empirically, patients’ and their family members’ goals and values in the context of Parkinson’s disease (PD) and applicable treatments, such as deep brain stimulation (DBS).
Results of our studies have identified the reasons PD patients seek DBS treatment and the extent to which DBS addresses their goals. These data demonstrate that patient goals are not measured sufficiently using existing standard clinical measures to determine treatment efficacy and that patient goals change over the course of DBS. These results have very clear and pragmatic implications for the development of outcome measures that reflect patient goals and highlight the importance of an informed consent process that includes a systematic, clear assessment of patient goals with a discussion regarding the possibility that some goals may change over the course of DBS.
Our most recent work assesses, systematically, patient and family member's most valued personality characteristics and the extent to which PD and DBS impact those important personality characteristics. Our goals are to identify whether PD and/or DBS treatment results in changes to an individual's personality, to determine if commonly used personality measures can capture patient values fully, and to examine the consistency between patient and family member ratings. Our preliminary data suggest that existing personality measures may not identify fully the characteristics that are most important to patients and their families. In addition, these data highlight the importance of pro-social behaviors, such as kindness, love, and compassion. We have begun to extend the breadth of this study to include patients with other neurodegenerative disorders. This effort seeks to examine the relationship between the underlying neurobiological mechanisms and the individually identified important personality characteristics. These data have implications in the delivery of healthcare, the informed consent process, and philosophical and public discussions surrounding personality and identity by systematically incorporating the perspectives of patients and their family members.
Finally, our team recently secured funding from the Ohio Humanities to support public discussions examining various representations of personhood and personality in the context of a diagnosis of dementia. Our goal is that the data that emerge from our work will help reduce the stigma associated with a diagnosis of dementia.
Dr. Kubu and her team have secured a recent grant that studies Essential Tremor patients. These patients will share their perceptions of treatment options, behavioral and functional goals and changes in personality characteristics. Their tremors will be assessed using a new I phone app and also an accelerometer device. The information gathered will give doctors a better understanding of expectations, experiences surrounding treatment decisions, control, personality changes and the severity of the patients tremor before and after their chosen treatment method.
Contact Information
Michelle Montpetite
montpem@ccf.org
Funding Sources
NINDS NIH, Ethics of Control and Consent in Brain Stimulation for Parkinson's Disease, Mechanism: RC1, Co-Principal Investigators: Cynthia S. Kubu, PhD & Paul Ford, PhD; $834,860.00 October 2009- No cost extension.
NIMH NIH, Ethics of Patients’ and Care Partners’ Perspectives on Personality Change in Parkinson’s disease and Deep Brain Stimulation. Mechanism: RO1, Principal Investigator: Cynthia S. Kubu, PhD; $1,673, 882 Total Award 9.13.2017 – 6.30.2021.
Ohio Humanities, Dementia and Personhood: Facts and Myths. Principal Investigator: Cynthia S. Kubu, PhD; $34,000 Total Award (including matching funds) 11.1.2019- 10.31. 2020.
Publications
Pragmatism and the importance of interdisciplinary teams in investigating personality changes following DBS. Kubu, C.S., Ford, P.J., Wilt, J.A. et al. Neuroethics (2019). https://doi.org/10.1007/s12152-019-09418-3.
The Role of a Neuropsychologist on a Movement Disorders Deep Brain Stimulation Team. Kubu, C.S., Archives Of Clinical Neuropsychology: The Official Journal Of The National Academy Of Neuropsychologists, 2018. 33(3): p. 365-374.
Patients' shifting goals for deep brain stimulation and informed consent. Kubu, C.S., et al., Neurology, 2018. 91(5): p. e472-e478.
Insights gleaned by measuring patients' stated goals for DBS: More than tremor. Kubu, C.S., et al., Neurology, 2017. 88(2): p. 124-130.
Being open minded about neuromodulation trials: Finding success in our "failures". Fins, J.J., et al., Brain Stimulation, 2017. 10(2): p. 181-186.
Clinical Ethics in the Context of Deep Brain Stimulation for Movement Disorders. Kubu, C.S. and P.J. Ford, Archives Of Clinical Neuropsychology: The Official Journal Of The National Academy Of Neuropsychologists, 2017. 32(7): p. 829-839.
Hope language in patients undergoing epilepsy surgery. Patton, D.J., et al., Epilepsy & Behavior: E&B, 2013. 29(1): p. 90-95.
Beyond Mere Symptom Relief in Deep Brain Stimulation: An Ethical Obligation for Multi-faceted Assessment of Outcome. Kubu, C.S. and P.J. Ford, AJOB Neuroscience, 2012. 3(1): p. 44-49.
Misuse of the FDA's humanitarian device exemption in deep brain stimulation for obsessive-compulsive disorder. Fins, J.J., et al., Health Affairs (Project Hope), 2011. 30(2): p. 302-311.
Ethical guidance for the management of conflicts of interest for researchers, engineers and clinicians engaged in the development of therapeutic deep brain stimulation. Fins, J.J., et al., Journal Of Neural Engineering, 2011. 8(3): p. 033001-033001.
Ethics in the clinical application of neural implants. Kubu, C.S. and P.J. Ford, Cambridge Quarterly Of Healthcare Ethics: CQ: The International Journal Of Healthcare Ethics Committees, 2007. 16(3): p. 317-321.
Members & Collaborations
Cynthia S. Kubu, PhD, ABPP-CN
Principal Investigator
Center for Neurological Restoration
Cleveland Clinic, P57
9500 Euclid Ave.
Cleveland, OH 44195
Phone: 216.445.6848
Email: kubuc@ccf.org
Paul Ford, PhD
Co-Principal Investigator & Co-Investigator
Department of Bioethics
Cleveland Clinic
Email: fordp@ccf.org
Scott E. Cooper, MD, PhD
Co-Investigator
Department of Neurology
University of Minnesota
Email: secooper@umn.edu
Hubert Fernandez, MD
Co-Investigator
Center for Neurological Restoration
Cleveland Clinic
Email: fernanh@ccf.org
Thomas Frazier, PhD
Co-Investigator
Autism Speaks
Email: Thomas.Frazier@autismspeaks.org
Brittany Lapin, PhD
Co-Investigator
Department of Quantitative Health
Cleveland Clinic
Email: lapinb@ccf.org
Andre Machado, MD, PhD
Co-Investigator
Center for Neurological Restoration
Cleveland Clinic
Email: machada@ccf.org
Michelle Montpetite
Research Coordinator
Center for Neurological Restoration
Cleveland Clinic
Email: montpem@ccf.org
Eric Racine, PhD
Co-Investigator
Institut de recherché Clinique Montreal
Email: eric.racine@ircm.qc.ca
Lauren Sankary, JD
Co-Investigator
Department of Bioethics
Cleveland Clinic
Email: sankarl@ccf.org
Jerrold Vitek, MD, PhD
Co-Investigator
Department of Neurology
University of Minnesota
Email: vitek003@umn.edu
Jaclyn Zeigler
Research Coordinator II
Center for Neurological Restoration
Cleveland Clinic
Email: zeiglej@ccf.org
Amanda Merner
Research Student
Email: mernera2@ccf.org
Phone: 216.444.1826
