Shared Decision-Making and Ethics in Complex Neurology Clinical Research: Paul Ford, PhD
Advertisement Commentary|Videos|September 12, 2025 Shared Decision-Making and Ethics in Complex Neurology Clinical Research: Paul Ford, PhD Author(s)Isabella Ciccone, MPHPaul Ford, PhD Fact checked by: Marco Meglio The director of the Neuroethics Program at Cleveland Clinic discussed ethics training, shared decision-making, and safeguards in guiding patients, families, and clinicians through complex clinical research decisions. [WATCH TIME: 3 minutes] Advertisement WATCH TIME: 3 minutes | Captions are auto-generated and may contain errors."The [Cleveland Clinic] Neurological Institute, for 20 years, has been deeply committed to having me collaborate and be a partner—not as an outside police—in developing their research, supporting their researchers, helping multidisciplinary teams select patients for complex surgeries, and meeting with patients and sometimes research participants to help with complex decisions."Neuroethics is a discipline that examines the ethical, legal, and societal implications of neuroscience. As advances in brain monitoring and modulation raise questions related to privacy, identity, justice, and autonomy, neuroethicists collaborate with neuroscientists to address these issues. Using analytical and philosophical frameworks, they work to identify the perspectives of patients, families, clinicians, and researchers, while anticipating and helping to manage potential conflicts. This process can inform how neuroscience studies are designed, conducted, and applied in both research and clinical practice.1At Cleveland Clinic, the Neuroethics Program is part of the Center for Bioethics and functions in partnership with the Neurological Institute. Directed by clinical ethicist Paul Ford, PhD, and Lauren R. Sankary, JD, associate director, the program focuses on ethical challenges associated with brain-based diseases, which are increasingly prevalent and contribute significantly to global disability. Its efforts include research, education, and clinical support in collaboration with clinicians, researchers, and bioethicists, with attention to issues arising in the prevention, diagnosis, and treatment of neurological conditions.2In a recent interview with NeurologyLive®, Ford discussed the role of ethics education and structured safeguards in clinical care and research, particularly when patients also serve as research participants. He highlighted the need for clinicians, researchers, patients, and families to build skills for navigating complex technologies and decisions, respectfully and collaboratively. Drawing on lessons from cancer research and his 20 years of work at the Neurological Institute, Ford described how integrating ethics into multidisciplinary teams ensures informed, safe, and patient-centered decision-making.REFERENCES1. National Institute of Neurological Disorders and Stroke. Neuroethics. Published January 2022.Accessed September 11, 2025. https://www.ninds.nih.gov/sites/default/files/documents/NINDS%20Neuroethics%20Program%20one-pager%20final_Jan2022_508C.pdf2. Cleveland Clinic. Neuroethics Program. Accessed September 11, 2025. https://my.clevelandclinic.org/departments/bioethics/neuroethics NewsletterKeep your finger on the pulse of neurology—subscribe to NeurologyLive for expert interviews, new data, and breakthrough treatment updates.Subscribe Now! Advertisement Related ArticlesNeurologyLive® Friday 5 — September 12, 2025September 12th 2025FDA Hands Complete Response Letter to SL1009 for Pyruvate Dehydrogenase Complex DeficiencySeptember 12th 2025Expanding the Alzheimer Drug Development Pipeline September 12th 2025Special Episode: Understanding Fremanezumab's Expanded Indication in Pediatric MigraineSeptember 12th 2025Enhancing Gene Therapy Safety for Duchenne Through New Recommendations: Barry Byrne, MD, PhDSeptember 11th 2025Shifting Roles in Neurology Education: Insights From the 2025 AUPN Annual MeetingSeptember 11th 2025 Latest CMEMultimediaBurst CME™ Part II: The Evolving Treatment Landscape for Huntington DiseaseSamuel A. Frank, MDView moreIn-Person + Virtual EventCarolina Neuromuscular Disease SummitSeptember 27, 2025View moreVideoEvolving Perspectives in Alzheimer's Disease: Reaching an Earlier Diagnosis, Understanding Neuroinflammation, and Exploring Therapeutic AdvancesAlireza Atri, MD, PhD; Erik S. Musiek, MD, PhD; Malú Gámez Tansey, PhD View moreCase-based SimulationSimulatEd™ From Discomfort to Relief: Acute Pain Management EssentialsJeff Gudin, MDView moreMultimedia Clinical ShowCase: Developing a Personalized Treatment Plan for a Patient with Huntington’s Disease Associated ChoreaDaniel Claassen, MD, MS; Martha A. Nance, MDView moreIn-Person + Virtual EventPutting the Patient First in Acute Pain Management: The PA’s Guide to Incorporating Cutting-Edge Science into their Treatment StrategiesOctober 9, 2025View moreIn-Person Event4th Women in Neurology ConferenceOctober 24-26, 2025Register now!VideoMedical Crossfire® - Optimizing Management for Patients With Generalized Myasthenia Gravis: Focus on Complement InhibitorsJames F. Howard Jr, MD; Nicholas J. Silvestri, MD, FAAN; Neelam Goyal, MDView moreVideoMedical Crossfire®: Integrating Real-World Data to Improve Outcomes for Patients With Multiple SclerosisCarrie M. Hersh, DO, MSc, FAAN; Anna Shah, MDView moreMultimediaBurst CME™: Optimizing Migraine Management – Addressing Unmet Needs, Individualizing Care for Diverse Populations, and Utilizing CGRP Targeted AgentsJessica Ailani, MD, FAHS, FAAN; Paul G. Mathew, MD, DNBPAS, FAAN, FAHSView moreMultimediaBurst CME™: Setting the Stage – Individualizing Migraine Care for Diverse Populations Across Care SettingsJessica Ailani, MD, FAHS, FAAN; Paul G. Mathew, MD, DNBPAS, FAAN, FAHSView moreMultimediaCommunity Practice Connections™: Optimizing the Management of Tardive Dyskinesia—Addressing the Complexity of Care With Targeted TreatmentIlan Melnick, MD; Alejandro Alva, MD; Linda Trinh, DNP, PMHNP, FNP, MPHView moreMultimediaBurst CME™: Optimizing the Use of CGRP Targeted Agents for the Treatment of MigraineJessica Ailani, MD, FAHS, FAAN; Paul G. Mathew, MD, DNBPAS, FAAN, FAHSView moreMultimediaBurst CME™: The Patient Journey – Unmet Needs From Diagnosis Through Management of MigraineJessica Ailani, MD, FAHS, FAAN; Paul G. Mathew, MD, DNBPAS, FAAN, FAHSView moreMultimedia Evolving Perspectives in Alzheimer Disease : Reaching an Earlier Diagnosis, Understanding Neuroinflammation, and Exploring Therapeutic AdvancesAlireza Atri, MD, PhD; Erik S. Musiek, MD, PhD; Malú Gámez Tansey, PhDView moreVirtual EventExpert Illustrations & Commentaries™: Visualizing the Role of B Cells as Therapeutic Targets for Generalized Myasthenia GravisOctober 31, 2025View moreVideoCases and Conversations™: Applying Best Practices to Prevent Shingles in Your PracticePaul G. Auwaerter, MD, MBA; Paul P. Doghramji, MD, FAAFP; Aruna Subramanian, MDView moreVideoPatient, Provider, and Caregiver Connection™: Pediatric Myasthenia Gravis—Current Treatment and Emerging ConceptsJohn F. Brandsema, MD; Abigail N. Schwaede, MD; Samuel J. Mackenzie, MD, PhDView moreAudioMind Moments™: Optimizing Management for Patients with Generalized Myasthenia GravisJames F. Howard Jr, MDView moreVideoIdentifying and Treating CIDP in the Modern EraJeffrey A. Allen, MD; Karissa L. Gable, MDView moreVideoCases and Conversations™: Little Voices, Big Challenges – Comprehensive Care for Pediatric Spinal Muscular AtrophyJohn Brandsema, MD; Carla D. Zingariello, DOView moreVideoCases and Conversations™: Navigating the Complexities of Managing Myasthenia Gravis in Pediatric and Pregnant Patient PopulationsJohn Brandsema, MD; Neelam Goyal, MDView moreVideoA Breath of Strength: Managing Cancer Associated LEMS and Lung Cancer as OneEstelamari Rodriguez, MD, MPH; Millie Das, MD; Ruham Nasany, MDView moreVideoStriking the Right Nerve: Managing Cancer Associated LEMS in Lung Cancer PatientsAnne Chiang, MD, PhD; J. Douglas Miles, MD, PhD, FAAN; Suma Satti, MDView moreVideoPatient, Provider, and Caregiver Connection: Improving Diagnosis and Care for Adolescent Myasthenia Gravis Patients – A New FrontierAbigail N. Schwaede, MD; Emmanuelle (Noelle) Tiongson, MDView moreVideoA New Era in NMOSD Treatment: Optimizing Therapeutic Transitions and Reducing Patient BurdenShamik Bhattacharyya, MD, MS, FAAN; Mirla Avila, MD; Dean Wingerchuk, MDView moreAudioPER Podcast™: Maximizing the Multidisciplinary Care Outcomes of Patients with Amyotrophic Lateral Sclerosis (ALS)Richard Bedlack, MD, PhDView moreAudioPER Podcast™: Best Strategies for Approaching the Diagnosis of Amyotrophic Lateral Sclerosis (ALS)Terry Heiman-Patterson, MDView moreVideoPER Postgame™: Updates from ANNA in the Management of IgA NephropathyGerald Bernard Appel, MD; Ellie Kelepouris, MD, FACP, FAHAView moreVideoPatient, Provider, and Caregiver Connection: Turning a New Leaf in Acute Pain Management – How Recent Advancements Impact the Treatment ParadigmJeffrey Gudin, MD; Jeffrey Bettinger, PharmDView morePrevious slideNext slide Advertisement Advertisement Trending on NeurologyLive1Enhancing Gene Therapy Safety for Duchenne Through New Recommendations: Barry Byrne, MD, PhD2Expanding the Alzheimer Drug Development Pipeline 3FDA Hands Complete Response Letter to SL1009 for Pyruvate Dehydrogenase Complex Deficiency4Patient-Reported Study Identifies Common Symptoms and Timing During Migraine Prodrome 5Setting Realistic Expectations for Antiamyloid Therapeutics Advertisement Commentary|Videos|September 12, 2025 Shared Decision-Making and Ethics in Complex Neurology Clinical Research: Paul Ford, PhD Author(s)Isabella Ciccone, MPHPaul Ford, PhD Fact checked by: Marco Meglio The director of the Neuroethics Program at Cleveland Clinic discussed ethics training, shared decision-making, and safeguards in guiding patients, families, and clinicians through complex clinical research decisions. [WATCH TIME: 3 minutes] Advertisement WATCH TIME: 3 minutes | Captions are auto-generated and may contain errors."The [Cleveland Clinic] Neurological Institute, for 20 years, has been deeply committed to having me collaborate and be a partner—not as an outside police—in developing their research, supporting their researchers, helping multidisciplinary teams select patients for complex surgeries, and meeting with patients and sometimes research participants to help with complex decisions."Neuroethics is a discipline that examines the ethical, legal, and societal implications of neuroscience. As advances in brain monitoring and modulation raise questions related to privacy, identity, justice, and autonomy, neuroethicists collaborate with neuroscientists to address these issues. Using analytical and philosophical frameworks, they work to identify the perspectives of patients, families, clinicians, and researchers, while anticipating and helping to manage potential conflicts. This process can inform how neuroscience studies are designed, conducted, and applied in both research and clinical practice.1At Cleveland Clinic, the Neuroethics Program is part of the Center for Bioethics and functions in partnership with the Neurological Institute. Directed by clinical ethicist Paul Ford, PhD, and Lauren R. Sankary, JD, associate director, the program focuses on ethical challenges associated with brain-based diseases, which are increasingly prevalent and contribute significantly to global disability. Its efforts include research, education, and clinical support in collaboration with clinicians, researchers, and bioethicists, with attention to issues arising in the prevention, diagnosis, and treatment of neurological conditions.2In a recent interview with NeurologyLive®, Ford discussed the role of ethics education and structured safeguards in clinical care and research, particularly when patients also serve as research participants. He highlighted the need for clinicians, researchers, patients, and families to build skills for navigating complex technologies and decisions, respectfully and collaboratively. Drawing on lessons from cancer research and his 20 years of work at the Neurological Institute, Ford described how integrating ethics into multidisciplinary teams ensures informed, safe, and patient-centered decision-making.REFERENCES1. National Institute of Neurological Disorders and Stroke. Neuroethics. Published January 2022.Accessed September 11, 2025. https://www.ninds.nih.gov/sites/default/files/documents/NINDS%20Neuroethics%20Program%20one-pager%20final_Jan2022_508C.pdf2. Cleveland Clinic. Neuroethics Program. Accessed September 11, 2025. https://my.clevelandclinic.org/departments/bioethics/neuroethics NewsletterKeep your finger on the pulse of neurology—subscribe to NeurologyLive for expert interviews, new data, and breakthrough treatment updates.Subscribe Now! Advertisement Related ArticlesNeurologyLive® Friday 5 — September 12, 2025September 12th 2025FDA Hands Complete Response Letter to SL1009 for Pyruvate Dehydrogenase Complex DeficiencySeptember 12th 2025Expanding the Alzheimer Drug Development Pipeline September 12th 2025Special Episode: Understanding Fremanezumab's Expanded Indication in Pediatric MigraineSeptember 12th 2025Enhancing Gene Therapy Safety for Duchenne Through New Recommendations: Barry Byrne, MD, PhDSeptember 11th 2025Shifting Roles in Neurology Education: Insights From the 2025 AUPN Annual MeetingSeptember 11th 2025 Latest CMEMultimediaBurst CME™ Part II: The Evolving Treatment Landscape for Huntington DiseaseSamuel A. Frank, MDView moreIn-Person + Virtual EventCarolina Neuromuscular Disease SummitSeptember 27, 2025View moreVideoEvolving Perspectives in Alzheimer's Disease: Reaching an Earlier Diagnosis, Understanding Neuroinflammation, and Exploring Therapeutic AdvancesAlireza Atri, MD, PhD; Erik S. Musiek, MD, PhD; Malú Gámez Tansey, PhD View moreCase-based SimulationSimulatEd™ From Discomfort to Relief: Acute Pain Management EssentialsJeff Gudin, MDView moreMultimedia Clinical ShowCase: Developing a Personalized Treatment Plan for a Patient with Huntington’s Disease Associated ChoreaDaniel Claassen, MD, MS; Martha A. Nance, MDView moreIn-Person + Virtual EventPutting the Patient First in Acute Pain Management: The PA’s Guide to Incorporating Cutting-Edge Science into their Treatment StrategiesOctober 9, 2025View moreIn-Person Event4th Women in Neurology ConferenceOctober 24-26, 2025Register now!VideoMedical Crossfire® - Optimizing Management for Patients With Generalized Myasthenia Gravis: Focus on Complement InhibitorsJames F. Howard Jr, MD; Nicholas J. Silvestri, MD, FAAN; Neelam Goyal, MDView moreVideoMedical Crossfire®: Integrating Real-World Data to Improve Outcomes for Patients With Multiple SclerosisCarrie M. Hersh, DO, MSc, FAAN; Anna Shah, MDView moreMultimediaBurst CME™: Optimizing Migraine Management – Addressing Unmet Needs, Individualizing Care for Diverse Populations, and Utilizing CGRP Targeted AgentsJessica Ailani, MD, FAHS, FAAN; Paul G. Mathew, MD, DNBPAS, FAAN, FAHSView moreMultimediaBurst CME™: Setting the Stage – Individualizing Migraine Care for Diverse Populations Across Care SettingsJessica Ailani, MD, FAHS, FAAN; Paul G. Mathew, MD, DNBPAS, FAAN, FAHSView moreMultimediaCommunity Practice Connections™: Optimizing the Management of Tardive Dyskinesia—Addressing the Complexity of Care With Targeted TreatmentIlan Melnick, MD; Alejandro Alva, MD; Linda Trinh, DNP, PMHNP, FNP, MPHView moreMultimediaBurst CME™: Optimizing the Use of CGRP Targeted Agents for the Treatment of MigraineJessica Ailani, MD, FAHS, FAAN; Paul G. Mathew, MD, DNBPAS, FAAN, FAHSView moreMultimediaBurst CME™: The Patient Journey – Unmet Needs From Diagnosis Through Management of MigraineJessica Ailani, MD, FAHS, FAAN; Paul G. Mathew, MD, DNBPAS, FAAN, FAHSView moreMultimedia Evolving Perspectives in Alzheimer Disease : Reaching an Earlier Diagnosis, Understanding Neuroinflammation, and Exploring Therapeutic AdvancesAlireza Atri, MD, PhD; Erik S. Musiek, MD, PhD; Malú Gámez Tansey, PhDView moreVirtual EventExpert Illustrations & Commentaries™: Visualizing the Role of B Cells as Therapeutic Targets for Generalized Myasthenia GravisOctober 31, 2025View moreVideoCases and Conversations™: Applying Best Practices to Prevent Shingles in Your PracticePaul G. Auwaerter, MD, MBA; Paul P. Doghramji, MD, FAAFP; Aruna Subramanian, MDView moreVideoPatient, Provider, and Caregiver Connection™: Pediatric Myasthenia Gravis—Current Treatment and Emerging ConceptsJohn F. Brandsema, MD; Abigail N. Schwaede, MD; Samuel J. Mackenzie, MD, PhDView moreAudioMind Moments™: Optimizing Management for Patients with Generalized Myasthenia GravisJames F. Howard Jr, MDView moreVideoIdentifying and Treating CIDP in the Modern EraJeffrey A. Allen, MD; Karissa L. Gable, MDView moreVideoCases and Conversations™: Little Voices, Big Challenges – Comprehensive Care for Pediatric Spinal Muscular AtrophyJohn Brandsema, MD; Carla D. Zingariello, DOView moreVideoCases and Conversations™: Navigating the Complexities of Managing Myasthenia Gravis in Pediatric and Pregnant Patient PopulationsJohn Brandsema, MD; Neelam Goyal, MDView moreVideoA Breath of Strength: Managing Cancer Associated LEMS and Lung Cancer as OneEstelamari Rodriguez, MD, MPH; Millie Das, MD; Ruham Nasany, MDView moreVideoStriking the Right Nerve: Managing Cancer Associated LEMS in Lung Cancer PatientsAnne Chiang, MD, PhD; J. Douglas Miles, MD, PhD, FAAN; Suma Satti, MDView moreVideoPatient, Provider, and Caregiver Connection: Improving Diagnosis and Care for Adolescent Myasthenia Gravis Patients – A New FrontierAbigail N. Schwaede, MD; Emmanuelle (Noelle) Tiongson, MDView moreVideoA New Era in NMOSD Treatment: Optimizing Therapeutic Transitions and Reducing Patient BurdenShamik Bhattacharyya, MD, MS, FAAN; Mirla Avila, MD; Dean Wingerchuk, MDView moreAudioPER Podcast™: Maximizing the Multidisciplinary Care Outcomes of Patients with Amyotrophic Lateral Sclerosis (ALS)Richard Bedlack, MD, PhDView moreAudioPER Podcast™: Best Strategies for Approaching the Diagnosis of Amyotrophic Lateral Sclerosis (ALS)Terry Heiman-Patterson, MDView moreVideoPER Postgame™: Updates from ANNA in the Management of IgA NephropathyGerald Bernard Appel, MD; Ellie Kelepouris, MD, FACP, FAHAView moreVideoPatient, Provider, and Caregiver Connection: Turning a New Leaf in Acute Pain Management – How Recent Advancements Impact the Treatment ParadigmJeffrey Gudin, MD; Jeffrey Bettinger, PharmDView morePrevious slideNext slide Advertisement Advertisement Trending on NeurologyLive1Enhancing Gene Therapy Safety for Duchenne Through New Recommendations: Barry Byrne, MD, PhD2Expanding the Alzheimer Drug Development Pipeline 3FDA Hands Complete Response Letter to SL1009 for Pyruvate Dehydrogenase Complex Deficiency4Patient-Reported Study Identifies Common Symptoms and Timing During Migraine Prodrome 5Setting Realistic Expectations for Antiamyloid Therapeutics