The mission of the NeuroEthics Program is to conduct cutting-edge neuroethics research, both scholarly and empirical, provide the highest level of training in clinical neuroethics and develop and promulgate best ethical practices in the diagnosis and treatment of neurological diseases that include provision of ethics services to patients, families, and care providers.
Thank you to everyone to attended and made the Brain Matters 3 conference an overwhelming success.
Cleveland Clinic's NeuroEthics Program (NEP-CC) is housed in the Department of Bioethics, but constitutes a partnership between the Neurological Institute and the Department of Bioethics, with faculty from both areas. Paul J. Ford, PhD serves as the Director of the NEP with Cynthia Kubu, PhD serving as Associate Director of Neuroethics Research and Adrienne Boissy, MD as Associate Director of Clinical Neuroethics.
Great need exists to address the emerging ethical challenges faced by patients, families, caretakers, researchers and clinicians related to brain-based diseases. This is particularly true given the increasing incidence of brain based diseases and the resulting world wide burden of suffering and disability. In the NeuroEthics Program at Cleveland Clinic, we approach these ethical challenges in a practical manner starting from the problems that arise in the prevention, diagnosis and treatment of neurological conditions. We undertake research, education and clinical support through collaborations with clinicians, clinical researchers and bioethicists.
If you are a resident or fellow considering Cleveland Clinic for a Neurology Residency or Fellowship and would like to continue your studies in Ethics, please contact Paul Ford, PhD at email@example.com.
NeuroEthics Program Faculty
Research Staff and Students
Jalayne Arias, JD
Michael Kelly, MD
The NeuroEthics Program faculty provides clinical ethics consultation services within Cleveland Clinic to patients, families, clinicians, and researchers. Further, we are actively involved on a national and international level regarding various neuroethics related work.
Other functions in Clinical NeuroEthics:
- Consent monitor for clinical research
- Participation in specialized patient management conferences including conferences for Epilepsy Surgery and Deep Brain Stimulation highlighting patient selection and challenging patient care issues
- Frequently consulted on specific inpatient and outpatient neurosurgical issues: called on over twenty times per year to consult on specific inpatient/outpatient surgical issues
The NeuroEthics Program faculty undertakes research from a variety of perspectives that range from primarily scholarly and to primarily empirical. Below is a list of recent publications and projects.
1. "Ethics of Control and Consent in Brain Stimulation for Parkinson Disease." This NIH Challenge Grant is funded by the National Institute of Neurological Disorders and Stroke, Mechanism: RC1. Paul J. Ford PhD and Cynthia Kubu, PhD, Co-PIs, October 2009-September 2011.
Summary: The study examines the ethical challenges inherent in participants' considerations of control using Deep Brain Stimulation (DBS) for the treatment of Parkinson Disease (PD). In order to provide better informed consent it is important to recognize the challenges inherent in the shifting nature of personal control that occurs before and after DBS therapy. The study employs a repeated measures design in which 50 participants with Parkinson Disease who are undergoing DBS will rate and rank symptom management and personal control with respect to specific individually tailored behaviors compared prior to surgery and at two time points following surgery (3 months and 6 months post-operative).
2. “Educational Interactivity for Ethics Cases: A computer mediated approach to a tailored residency ethics interface.” CCF Medical Educational Fellowship Paul J. Ford, PhD, PI.
Summary: The goal of this grant is to develop an advanced educational theory and framework for ethics training of neurosurgical residents using a reflective, self-directed case write-up methodology that is practice based.
3. Ethics of Control and Consent in Patients Undergoing Epilepsy Surgery," The Greenwall Foundation, Paul J. Ford, PhD and Cynthia Kubu, PhD, Co-PIs, January 2010 - December 2011.
Summary: The issues surrounding control are particularly paramount in patients with intractable epilepsy. One of the defining behavioral characteristics of seizures is the patient’s loss of control. Seizures are often characterized by loss of control of movement, language, and emotions and often patients are amnesic for the seizure. Resective neurosurgical procedures continue to raise difficult issues of personal control given the non-reversible nature and potential for direct alterations in cognitive abilities, mood and personality. The study employs a repeated measures design in which thirty-six participants’ ratings and rankings of symptom management and personal control with respect to specific individually tailored behaviors are compared prior to epilepsy surgery and at two time points following surgery.
Recent Publications »
- Boissy AR, Ford PJ. In Press. "A Touch of MS: A Case of Therapeutic Mislabeling." Neurology Journal.
- Ford PJ. 2009. “Vulnerable Brains: Research Ethics and Neurosurgical Patients.” Journal of Law, Medicine, and Ethics, 37:73-82.
- Ford PJ, DeMarco JP. 2009. “Anonymous Message Accusing Patient of Drug Swapping.” Hastings Center Report, 39(4): 11-12.
- Ford PJ, Deshpande A. 2009. “Ethics: Life and Death Choices in Traumatic Brain Injury,” in Brain Trauma and Critical Care. eds. Jallo J, Loftus CM. Thieme.
- Ford PJ. 2009. “Hacking the Mind: Existential Enhancement in Ghost in the Shell,” in Bioethics at the Movies. ed. Shapshay S. John’s Hopkins University Press: 156-169.
- Ford PJ. ed. 2008. “Clinical Neuroethics Consultation,” Special Section of Healthcare Ethics Committee (HEC) Forum, 20(4): 311-355.
- Farris S. Giroux M, DeMarco J, Ford P. 2008. “Deep Brain Stimulation and the Ethics of Protection and Caring for the Patient with Parkinson’s Dementia.” Movement Disorders, 23(14): 1973-1976.
- Boissy AR, Ford PJ, Edgell RC, Furlan A. 2008. “Ethics Consultations in Patients Admitted To Neurological Centered Hospital Units: A Seven Year Retrospective Review.” Neurocritical Care, 9(3): 394-399.
- Illes J, Kirschen MP, Edwards E, Stanford LR, Bandettini P, Cho M, Ford PJ, et. al. 2008. “Practical Approaches to Incidental Findings in Brain Imaging Research.” Neurology, 70(5): 384-90.
- Ford PJ. 2008. “Quality of Life, Professionalism, and Research Ethics in Spine Trauma,” in Spine Trauma and Critical Care. eds. Jallo J, Vaccaro AR. Thieme: 220-228.
- Deshpande A, Ford PJ. 2008. “Ethics in Neurosurgery Literature,” Research report. Congress of Neurosurgeons Quarterly (CNSQ) 8(4): 36-37.
- Ford PJ, Boulis N, Montgomery E, Rezai A. 2007. “A Patient Revoking Consent During Awake Craniotomy: An Ethical Challenge.” Neuromodulation, 10(4): 259-262.
- Ford PJ. 2007. “Cardiac Events and Brain Injury: Ethical Implications.” Cleveland Clinic Journal of Medicine, 74:S138-141.
- Ford PJ. 2007. “Neurosurgical Implants: Clinical Protocol Considerations.” Cambridge Quarterly of Healthcare Ethics, 16(3): 308-311.
- Kubu CS, Ford PJ. 2007. “Ethics in the Clinical Application of Neural Implants.” Cambridge Quarterly of Healthcare Ethics, 16(3): 317-321.
- Ford PJ, DeMarco JP. 2007. “Brains, Ethics, and Elective Surgeries: Emerging ethics consultation.” Ethics and Medicine, 23(1): 39-45.
- Ford PJ, Kubu CS. 2007. “Ameliorating and Exacerbating: Surgical ‘Prosthesis’ in Addiction.” American Journal of Bioethics (AJOB-Neuroscience), 7(1):32-34.
- Moskowitz S, Ford PJ. 2006. “Ethical Issues Associated with Health Care Industry Representatives in the Operating Room.” SpineLine, 4(5): 38-40.
- Ford PJ, Henderson JM. 2006. “The Clinical and Research Ethics of Neuromodulation.” Neuromodulation, 9(4): 249-252.
- Ford PJ. 2006. “Advancing From Treatment to Enhancement in Deep Brain Stimulation: A question of research ethics.” The Pluralist, 1(2):35-44.
- Illes J, Kirschen MP, Edwards E, Stanford LR, Bandettini P, Daniel M, Ford PJ, et. al. 2006. “Incidental Findings in Brain Imaging Research.” Science, 311: 783-784.
- Ford PJ, Kubu CS. 2006. “Stimulating Debate: Ethics in a Multidisciplinary Functional Neurosurgery Committee.” Journal of Medical Ethics, 32(2): 106-109.
- Ford PJ, Henderson J. 2005. “Neuroethics in the Operating Room: Functional Neurosurgical Interventions,” in Neuroethics: Defining the Issues in Theory, Practice and Policy, ed. Judy Illes. Oxford University Press: 213-228.
- Ford PJ, Kubu CS. 2005. “Caution in Leaping From Neuroimaging to Neuromodulation.” American Journal of Bioethics, 5(2): 23-25.
- "Control and Ethics in DBS: Pre-operative Patient Concerns and Ratings," Ford PJ, Kubu CS, Overman RA, Yee KM, Conant C, Cooper S, Machado A. 79th American of Neurological Surgeons Annual Scientific Meeting, Denver, CO, April 9-13, 2011.
- "Ethics of Control in DBS: Consent and Control Centered in Patients' Values," Ford PJ, Kubu CS in special session "integrated Neuroscience: Deep Brain Stimulation: Where Are We And Where Do We Go From Here?" 62nd annual meeting of the American Academy of Neurology, Toronto, ON, April 15, 2010
- “DBS and Ethics” Rubin DB, Ford PJ, American Society for Bioethics and Humanities, Denver, CO, October 26, 2006.
- “Teaching Ethics: A Review of Resident's Ethics Cases,” Ford PJ, Deshpande A, Boulis NM, Murphy C, Benzel EC, 56th Annual Meeting of the Congress of Neurologic Surgeons, Chicago, IL, October 09, 2006.
- “A 7-Year Retrospective Review of Bioethics Consultations in Patients with Stroke,” Edgell RC, Boissy A, Ford P, Furlan A, American Stroke Association’s International Stroke Conference 2006, Kissimee, FL, February 17, 2006.
- “Autonomy, Ulysses, and Limits: Revoking Consent During Brain Surgery,” Ford PJ, 4th Annual Meeting of the International Neuropsychological Society, Boston, MA, February 2, 2006.
- “Ethics Consultation for Epilepsy Surgery Candidates: Trends Across Time,” Ford PJ, Blixen CE, Agich GJ, Wyllie E, Bingaman W, American Neurological Association 129th Annual Meeting, Toronto, ON, October 5, 2004.
- “Protecting Human Subjects: Psychogenic Dystonia as an Exclusion Criterion for Deep Brain Stimulation Trials,” Ford PJ, Bramstedt KA, Vitek J, Neuromodulation 2004: Defining the Future, Cleveland, OH, October 3-6, 2004.
- “Intraoperative Revocation of Consent: A Structured Literature Review,” Ford PJ, Clough S, Wassen L, Henderson J, Neuromodulation 2004: Defining the Future, Cleveland, OH, October 3-6, 2004.
NeuroEthics Education Program
The NeuroEthics Program Faculty provide education in a number of venues that range from institutional efforts to international presentations. The program provides teaching of Cleveland Clinic residents, medical students and fellows with the opportunities for a one month rotation specializing in Neurology. We collaborate with the Neurological Institute residents and fellows and teach conferences developing a unique case write-up method of teaching, and we provide the opportunity for students to collaborate with research projects. This includes a new series of interactive lectures by senior clinicians reflecting on their ethical lessons learned on practice and research. Below is a list of recent and upcoming events.
NeuroEthics Conferences and Symposia
Past Conference Presentations
International NeuroEthics ConferenceBrain Matters 3: Values at the Crossroads of Neurology, Psychiatry and Psychology
October 24-25, 2012
Cleveland Marriott Downtown at Key Center
Brain Machine Interfaces – Implications for Science, Clinical Practice and Society Symposium
Ystad Saltsjobad, Sweden
Paul J. Ford, PhD presented ”Ethics of Control and consent in Brain Stimulation for Parkinson’s Disease”
ASBH Annual Meeting
San Diego, California
Paul J. Ford, PhD presented “Interactive Mentored Reflection: Progressing Case Based Teaching of Ethics for Residents”
Cambridge University Press
New York, NY
Paul J. Ford, PhD presented “Mentored Reflective Learning”
ASBH Annual Meeting
Paul J. Ford presented: "Quality of Life Surgeries, Patient Values, and Data: Epilepsy Surgery as a Paradigm.
American Epilepsy Society
Paul J. Ford is presenting: "Ethics and Patient Centered Epilepsy Surgery Outcomes."
If you are a resident or fellow considering Cleveland Clinic for a Neurology Residency or Fellowship and would like to continue your studies in Ethics, please contact Paul Ford at firstname.lastname@example.org.
- Steven Schiff, MD, PhD, Director, Penn State University, Center for Neural Engineering delivered a Distinguished NeuroEthics Lecture on October 20, 2011. He spoke on the topic of: "From Neurosurgery to Neonatal Sepsis: Ethical Reflections on Dung, Technology, and Public Policy."
- ASBH Annual Meeting: Six individuals participated in the main program regarding NeuroEthics.
- NIH Challenge Grant awarded to Paul J. Ford, PhD and Cynthia Kubu, PhD for study of ethics and control in DBS and Parkinsons. For more details see NeuroEthics Research.
- Greenwall Foundation Grant awarded to Paul J. Ford, PhD and Cynthia Kubu, PhD for study of ethics control in epilepsy patients undergoing epilepsy surgery. For more details see NeuroEthics Research.
- Cynthia Kubu, PhD is the participant in an international and interdisciplinary project group on ethical issues in "Deep Brain Stimulation in Psychiatry." Organization: Europaische Akademie
Distinguished Neuroethics Lectures Series
The Distinguished Neuroethics Lecture Series provides an opportunity to have a well respected leader in the Neurosciences field share their reflections on ethical lessons. Sharing these open and honest reflections provide an opportunity for other clinicians and researchers to learn and evaluate their own experiences.
The speakers have been asked to reflect on the three most important ethical lessons they have learned in their practice/research and the most important ethical dilemma currently facing their field.
June 16, 2010 – Inaugural Speaker
Roberta Bondar, PhD, MD, OC, O.Ont, FRCP(C), FRSC
Trust, Relationships, & Knowing Limits: Ethical reflections of a neurologist, researcher, astronaut.
Astronaut on the NASA Space Shuttle Discovery, January 22-30, 1992
Recipient of the Order of Canada
October 20, 2011
Steven Schiff, MD, PhD
From Neurosurgery to Neonatal Sepsis: Ethical Reflections on Dung Technology, and Public Policy
Director, Penn State Center for Neural Engineering
Brush Chair Professor of Engineering
Professor of Neurosurgery
March 13, 2012
James Rutka, MD, PhD, FRCSC, FACS, FAAP
Professor and Chair, Department of Surgery
Neurosurgeon, Division of Neurosurgery
Dan Family Chair in Neurosurgery
The Center welcomes donations to support this and future lecture series, if interested, please contact Paul Ford at email@example.com.
Continuing the tradition of Brain Matters conferences held in 2009 and 2011, this conference is designed to support and stimulate the emerging field of neuroethics. A primary theme will be ethical dilemmas posed by conditions without an identifiable biological correlate in both research and clinical settings.
Cleveland Clinic NeuroEthics Program, Cleveland Clinic Epilepsy Center & an NIH conference grant (Award# R13NS080513) from the National Institute Of Neurological disorders and Stroke (NINDS), Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), and Office of the Director (OD).
Research reported in this publication was supported by the National Institute Of Neurological Disorders And Stroke of the National Institutes of Health under Award Number R13NS080513. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
International Neuroethics Society
Brain Matters 3: Values at the Crossroads of Neurology, Psychiatry, and Psychology
October 24-25, 2012
Cleveland Marriott Downtown at Key Center
127 Public Square, Cleveland, Ohio
Brain Matters 3 Full Program