Cleveland Clinic's NeuroEthics Program (NEP-CC) is housed in the Center for 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.
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 firstname.lastname@example.org.
Lauren Sankary is joining us for Neurodegenerative Diseases Ethics and Policy Summer Internship in collaboration with Center for Brain Health.
In 2015, Dr. Paul Ford, Director of the NeuroEthics Program, was invited to join Scientific Advisory Board at University of Washington’s Center for Sensorimotor Neural Engineering.
Dr. Paul Ford presented “At the Frontier: The Ethics of Innovative Surgery” at Neuroethics Seminar Series Event, Center for Bioethics, Harvard Medical School, September 10, 2015
NeuroEthics Program Faculty
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.
- DeWeese J, Macado A, Ford PJ. 2015 “ Ethics of Preventive Timing and Robust Outcomes in Surgical Interventions for Anorexia Nervosa.” American Journal of Bioethics: Neuroscience.
- Esplin B, Machado AG, Ford PJ, Beasley K. 2015. “Applying guidelines to individual patients: Deep brain stimulation for early-stage Parkinson disease.” Virtual Mentor.
- Ford PJ, Stewart DO, DeMarco JP. 2015 “Increasing Common Rule Protections: IRB Consensus, Black Box Warnings, and Risk in Equipoise.” IRB.
- Ford PJ. 2015 “Brain Devices: Navigating Collaborations between Industry, Government, and Researchers.” American Journal of Bioethics: Neuroscience (Blog). http://theneuroethicsblog.blogspot.com/.
- Kibbe B, Schmitt P, Ford PJ. 2015 “An ethicist's scope of practice: Equipping stakeholders for closure.” Am J Bioeth.
- Thomas SM, Ford PJ, Weise KL, Worley S, Kodish E. 2015 “Not just little adults: A review of 102 paediatric ethics consultations. Acta Paediatr.” Epub
- Cristie M. Cole,Tatiana Falcone, Rochelle Caplan, Jane Timmons-Mitchell, Kristine Jares, Paul J. Ford. August 2014."Ethical dilemmas in pediatric and adolescent psychogenic nonepileptic seizures" Epilepsy & Behavior.
- Jalayne J. Arias, JD and Jason Karlawish, MD.2013. "Confidentiality in preclinical Alzheimer disease studies: When research and medical records meet."Neurology Journal.
- Emily Bell , Eric Racine, Paula Chiasson, Maya Dufourcq-Brana, Laura B. Dunn, Joseph J. Fins, Paul J. Ford, Walter Glannon, Nir Lipsman, Mary Ellen MacDonald, Debra J. H. Mathews, and Mary Pat McAndrews."Beyond Consent in Research Revisiting Vulnerability in Deep Brain Stimulation for Psychiatric Disorders"
- 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.
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.
President's Commission for Bioethics
Dr. Paul Ford, Director of the NeuroEthics Program made a presentation at the President's Commission for the Study of Bioethical Issues on August 20, 2014
- View the entire August 20, 2014 meeting at the President's Commission for the Study of Bioethical Issues website.
- View the Session 3 video of Dr. Paul Ford's presentation
- View the Session 5 video of Dr. Paul Ford's roundtable discussion
Current Grant News
"A Study of Benefit and Risk in People with MS," National Multiple Sclerosis Society Grant. Role: Co-investigator (directing qualitative portion), PI: Robert Fox, MD. August 2015 – Present.
"Assessing Access, Change, Concerns, and Consequences of People with MS Regarding Four Types of Personal Insurances," National Multiple Sclerosis Society Grant. Role: Co-investigator (directing qualitative portion), PI: Deborah Miller, PhD, August 2015 – Present.
"Understanding the worlds and spiritual laws that guide prenatal genetic technologies as a pathway to enhance life," Enhancing Life Project – funded by John Templeton Foundation through University of Chicago and Ruhr-University Bochum (Germany). Role: Co-investigator, PI: Ruth Farrell, MD. July 2015- Present.
Past Hosted Conference
Emerging Ethical and Legal Challenges in Chronic Neurological Conditions October 8-9, 2014 as Part of the Epilepsy Symposium