NeuroEthics Program: Matters of the Mind

Neurologists, neurosurgeons and behavioral health specialists practice in an increasingly complex ethical landscape. Brain surgery for epilepsy, deep brain stimulation (DBS) for movement disorders and preclinical diagnostic tests for Alzheimer disease pose ethical challenges for patients, families and clinicians.

“As we better understand brain mechanisms, clinicians and researchers will continue to propose new scans and interventions that challenge our core senses of identity, privacy and the mind,” says Director Paul J. Ford, PhD.

The Department of Bioethics and the Neurological Institute established Cleveland Clinic’s NeuroEthics Program in 2009. NeuroEthics faculty help clinicians and researchers explore ethical issues, offer guidance to patients and families struggling with decisions on diagnosis and care, conduct innovative research, sponsor continuing education and aid policy development.

Embedded in clinical operations

Cleveland Clinic’s NeuroEthics Program, one of the few in existence, has a unique focus on clinical practice and clinical research dilemmas.

“We participate in weekly meetings during which clinical teams evaluate individuals’ cases and think through the best treatment,” says Associate Director Jalayne J. Arias, JD, MA.

On the epilepsy surgery evaluation committee and the Deep Brain Stimulation evaluation committee, Dr. Ford helps assess ethical challenges in decision-making and informed consent. “We offer pragmatic support; emotional and value elements are important and should be considered,” he says.

Innovative clinical research

The faculty’s neuroscience research is unique. Ms. Arias and Dr. Ford have a range of research projects focusing on the use of evolving technology such as DBS for a growing range of brain conditions; dementias as contraindications for care; ethical legal implications of biomarkers in Alzheimer’s disease; decision making and trust in healthcare for professional fighters, and approaches to psychogenic nonepileptic seizures.

The NeuroEthics faculty helps researchers build additional safeguards into studies where patient-subject vulnerability risks are high. They review grants for the National Institutes of Health, U.S. Department of Defense, Health Research Board (Ireland), Netherlands Organization for Health Research and Development, and other institutions.

Sharing knowledge and expertise

NeuroEthics faculty are in demand nationally and internationally. For five years, faculty member Cynthia Kubu, PhD, has been a key part of a German-based internal consortium on ethical issues in deep brain stimulation. Faculty members have presented in Canada, England, Germany, France, Sweden and Switzerland; at major U.S. neurosurgery, neurology, epilepsy and neuropsychology conferences; and at the Board on Health Sciences Policy for the Institute of Medicine.

“Neurotechnology is increasingly a societal issue, and our program offers a practical model of ethics applied in clinical settings,” says Dr. Ford. “While factors such as universal healthcare in Canada play differently, the debate about quality of life and neurological disorders remains markedly similar in clinical settings around the world.”

The faculty offers continuing medical education for trainees, clinicians and ethicists, including the international “Brain Matters” conference and Distinguished Neuroethics Lecture Series. Past speakers have included, Paul Appelbaum, MD, Director of Law, Ethics and Psychiatry at Columbia University, spoke on gun policy and mental illness, Kristine Yaffe, MD, of the University of California, San Francisco, discussing difficult ethical dilemmas in research and clinical practice, Roberta Bondar MD, PhD, neurologist and former astronaut, who spoke on the ethical challenges of trust and uncertainty in neurological practice.

The faculty continually seek new opportunities to collaborate with professionals and patients. For more information on the NeuroEthics Program, visit clevelandclinic.org/neuroethics.