In this session, leaders from both HEARD and ACORD will discuss the neuroethical challenges that arise when brain and genetic research is conducted about, but not with, autistic people. Speaker will discuss the design of dialogue-based engagement models and the importance of a neuroethics that reflects the interests and priorities of affected communities — even when they are heterogeneous and divided.
- Juliana Chase, PhD
- Lea Witkowsky, PhD
- Bird Sellergren
- Jenny Phan, PhD
- Susan Kuo, PhD
Attend
Neuroethics 2026
Building Bridges and Cultivating Community
Friday, April 17, 2026
This session was part of the Neuroethics 2026 conference organized by the INS and hosted by the Stanford Center for Biomedical Ethics at the Bechtel Conference Center at Encina Hall.
Agenda
- Overview / 5 minutes
- Introduction to ACORD / 10 minutes
- Introduction to HEARD / 10 minutes
- Perspectives and lessons learned / 20 minutes
- Audience Q&A / 15 minutes
Description
Autism currently affects 1 in 32 individuals in the United States, yet there is no single “autism community” view on autism neuroscience research. Instead, perspectives range from enthusiastic backing to calls to dismantle or end certain research programs altogether. Despite few opportunities for autistic people and their families to engage directly with autism researchers, the findings from this research help determine how autism is defined, which traits are framed as deficits or differences, and how autistic people are perceived and treated by clinicians, policymakers, and the public.
To our knowledge, there have been only two structured attempts to bridge this gap between autism communities that hold opposing views on autism research with autism researchers themselves: Autism Communities & Research Dialogue (ACORD) and Healthy Engagement in Autism Research Dialogue (HEARD). HEARD, launched in 2024 by researchers and scientists at the Broad Institute and the Autism Science Foundation, creates a forum to discuss and share stakeholder perspectives on controversial topics in autism research. ACORD, held in Fall 2025 by the UC Berkeley Kavli Center for Ethics, Science, and the Public, brought together basic autism neuroscientists, autistic self-advocates, and caregivers to build mutual trust and understanding through facilitated dialogue. Together, these initiatives explore what ethically engaged autism research could look like. This work is urgent as federal and philanthropic investment in autism neuroscience grows, and as public understanding of autism is shaped by politicized narratives.
In this session, organizers from both HEARD and ACORD will discuss the neuroethical challenges that arise when brain and genetic research is conducted about, but not with, autistic people, the design of dialogue-based engagement models, and the importance of a neuroethics that reflects the interests and priorities of affected communities, even when they are heterogeneous and divided. Panelists will share practical lessons from these initiatives, critically examine the ethical responsibilities of autism neuroscientists to the communities they study, and help attendees identify concrete strategies for integrating meaningful community engagement into scientific research as an ethics practice.
Speakers
Juliana Chase, PhD
Researcher, Kavli Center for Ethics, Science, and the Public
Juliana Chase is a Project Analyst & Coordinator at the Kavli Center for Ethics, Science, and the Public working on special projects and supporting the operations of the center. She is interested in what happens when science leaves the lab and has been engaged in science policy and outreach organizations for the past decade contributing to mentoring, education and advocacy.
Lea Witkowsky, PhD
Executive Director, Kavli Center for Ethics, Science, and the Public
Dr. Lea Witkowsky is a molecular biologist by training who has applied her knowledge to a subsequent career in scientific governance, ethics, and multi-perspective engagement. As Executive Director of the Kavli Center for Ethics, Science, and the Public at UC Berkeley, she builds a transdisciplinary community of research and learning that breaks down barriers between disciplines and across academia and society, to work together to envision the futures we want our scientific advances to create. She is also a co-founder and co-director of the Berkeley Ethics and Regulation Group for Innovative Technologies, an ideas exchange and a meeting ground for conversations and collaborations across disciplines.
Bird Sellergren
Founder, Bay Area Autism Collective
Bird Sellergren, MA, is an autistic educator, researcher, and coach based in San Francisco. Their work centers on autism advocacy, access, and well-being, particularly for autistic adults navigating environments that were not designed with their neurology in mind. I bring together academic scholarship, nonprofit leadership, group facilitation, and lived experience to support individuals and organizations in developing approaches that are practical, ethical, and sustainable.
Jenny Phan
George Mason University
Dr. Jenny Mai Phan’s is a Research Assistant Professor in the Department of Bioengineering and the Assistant Director of Community Engagement at the Center for MedTech Innovation (CMI) at George Mason University. Her research is interdisciplinary and draws on biopsychology, stress physiology, behavioral endocrinology, mental health, and intellectual and developmental disabilities. She is passionate about advancing the understanding and support of disabled individuals and communities, especially during the sensitive period of adolescence. Dr. Phan is also committed to promoting disabilities and neurodiversity advocacy, education and outreach.
Susan Kuo
Broad Institute
Susan Kuo (she/her) is a postdoctoral research fellow at Massachusetts General Hospital/Harvard Medical School and Broad Institute of MIT and Harvard. She earned her PhD in clinical psychology from University of Pittsburgh and completed her clinical internship at UCLA Medical Center. Susan’s research examines etiological and experiential heterogeneity across the lifespan among people with neurodevelopmental disabilities, with a focus on autism and schizophrenia. She integrates approaches from genetic epidemiology, cognitive neuroscience, and clinical psychology, towards clarifying biological mechanisms and informing personalized supports for neurodiverse communities. Susan has been involved in HEARD since its inception, which informs her ongoing dissemination and implementation science efforts with autism community partners.
Resources
Keywords: community engagement; autism; neurodiversity;
Recording
A recording of this session will be made available to registered attendees.