Following the declaration of brain death by neurologic criteria (brain death), bodies in which ventilation and circulation are maintained exhibit many features of live human physiology. Since Coller’s testing of monoclonal antibodies in a recently deceased human in 1988, research has been conducted in brain-dead bodies for a narrow range of scientific topics, most notably in xenotransplantation research. In this session we will describe a recent proposal (Pet et al., Science 2025) to expand the scope of such research to facilitate the discovery of new neurogenetic therapies; as well as address gene carrier and family perspectives on how such research should be regulated.
- Dr. Claire Clelland
- Kelsey Homyk
- Dr. Douglas Pet
- Brendan Parent, JD
- Dr. Neel Singhal
Agenda
- Introduction by Claire Clelland / 5 minutes
- Personal journey with Kelsey Homyk / 10 minutes
- About the PMD platform with Douglas Pet / 5-8 minutes
- Practice considerations with Neel Singhal / 7-10 minutes
- Regulatory and ethical framework with Brendan Parent / 5 minutes
- Audience Q&A / 20-25 minutes
Attend
Bechtel Conference Center at Encina Hall
Main Hall
Friday, April 17, 2026
11:30-12:30pm PDT
Time check »
A password is required to watch this session virtually via Zoom. Only registered conference participants will receive the password.
Neuroethics 2026
Building Bridges and Cultivating Community
This session is part of the Neuroethics 2026 conference organized by the INS and hosted by the Stanford Center for Biomedical Ethics. Register for the conference to attend in-person at Stanford University in Stanford, California, U.S., or to participate virtually.
Description
Following the declaration of brain death by neurologic criteria (brain death), bodies in which ventilation and circulation are maintained exhibit many features of live human physiology, including some that are not present in animal models. Since Coller’s testing of monoclonal antibodies in a recently deceased human in 1988, research has been conducted in brain-dead bodies for a narrow range of scientific topics, most notably in xenotransplantation research. In this session we will describe a recent proposal (Pet et al., Science 2025) to expand the scope of such research to facilitate the discovery of new neurogenetic therapies. We will address the impact on gene carrier and family perspectives and discuss ethical and regulatory implications of discovery research in physiologically maintained deceased.
The development of CRISPR-based therapies for neurogenetic conditions is presently limited by the need for delivery particles that can access the human brain and spinal cord. Discovery pipelines based on animal models have demonstrated poor predictive validity for human translation, and genomic off-target effects cannot be accounted for in animal models that do not harbor the human genome. High-throughput analytical methods could enable researchers to conduct thousands of simultaneous head-to-head experiments in a single body. Such research could accelerate therapeutic discovery while reducing the wasteful use of animal subjects and minimizing risk to human subjects in early-phase trials.
At present, such research exists in a regulatory gray area, as U.S. guidelines (and guidelines in many other countries) for informed consent and the protection of human subjects define human subjects as living. There is thus no existing formal requirement that families give informed authorization to research involvement or that protocols undergo institutional review. Research in brain death also raises sensitive questions not usually considered central to research ethics, such as family emotional impact, the dignity of the human body, and demands on ICU facilities and staff.
Speakers
Claire Clelland, PhD, MD, MPhil
Assistant Professor, Neurology, UCSF
John Douglas French Alzheimer’s Foundation Founding Associates Endowed Professor, UCSF Weill Institute for Neurosciences
Dr. Clelland, PhD, MD, MPhil is a physician-scientst who specializes in caring for patients with dementia and cognitive symptoms at the UCSF Memory & Aging Center. Her lab at the UCSF Weill Institute for Neurosciences develops first-in-class therapies for neurodegenerative diseases. The Clelland lab is creating novel CRISPR gene therapies for genetic forms of dementia and ALS, utilizing patient iPSCs to model disease, advanced sequencing technologies and cutting-edge CRISPR technologies. As part of this effort she co-Chairs the NIH Somatic Cell Genome Engineering Consortium Steering Committee. Dr. Clelland is the recipient of national awards for neuroscience — The Alzheimer’s Association & NACC New Investigator Award, the American Neurologic Association’s Grass Foundation Award in Neuroscience, and WashU’s Bold Pioneer Award.
Disclosure: Dr. Clelland is a founder of, with equity in, Ciznor Co., a CNS therapeutics company
Kelsey Homyk
Kelsey Homyk is a speaker and advocate for the genetic Frontotemporal Dementia (FTD) and ALS community. As a C9orf72 gene carrier with a family history of neurodegenerative disease, she provides the perspective of lived experience to discussions on neurogenetics and bioethics. Her advocacy centers on the recognition of presymptomatic carriers and the acceleration of targeted therapies for C9-related FTD and ALS. She is currently a caregiver for her mother, who is in the advanced stages of an FTD and ALS diagnosis.
Douglas Pet, MD
Assistant Professor, Neurology, UCSF Weill Institute for Neurosciences
Douglas Pet, MD is an Assistant Professor of Neurology at UCSF, who has contributed to national discussions on the ethics of biotechnologies and genomic screening and develops and teaches medical school curricula on research ethics. As a neurohospitalist and educator, he is passionate about advanced clinical reasoning, end-of-life care, and DEI issues in inpatient neurology. He currently focuses on the ethical landscape of therapeutic research involving physiologically maintained bodies after brain death and aims to create community-informed, responsible frameworks to guide this work.
Brendan Parent, JD
Associate Professor, Department of Population Health,
Director, Division of Medical Ethics,
NYU Grossman School of Medicine
Brendan Parent, JD, is director of medical ethics and policy research and associate professor of bioethics in the division of medical ethics with joint appointment in surgery at NYU Grossman School of Medicine. He serves as an independent living donor advocate and provides ethics consultation for transplant programs across the United States. In addition to transplant ethics, Parent’s current work focuses on ethics of crisis resource allocation, ethical challenges surrounding big data and artificial intelligence in health research, and regulation of emerging medical technologies.
Neel Singhal, MD PhD
Associate Professor, Neurology, UCSF
Dr. Neel Singhal is a neurologist who cares for adults in UCSF’s Neurointensive Care Unit and conducts research at the UCSF Cardiovascular Research Institute. He specializes in stroke, traumatic brain injury and other neurologic emergencies, and is interested in improving the abilities to diagnose, treat and determine prognoses for patients with critical neurologic injuries.
Resources
Keywords: brain death, neurogenetics, informed consent
Recording
A recording of this session will be made available to registered attendees.