Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road
Bethesda, Maryland 20852
Map and Directions 
Agenda
The registration desk opens at 7:30 a.m. Eastern Time (ET) for members of the public attending in person, and the meeting will also be available to the public by live videocast and conference call. The materials for the workshop can be found here.
| Time | Event |
|---|---|
| 8:30 a.m. | Welcome and Introductions Alice Kau, PhD Program Director, Autism Spectrum Disorders Eunice Kennedy Shriver National Institute of Child Health and Human Development National Institutes of Health Co-Chair, ELSI Workshop Planning Committee Susan Daniels, PhD Acting Director, Office of Autism Research Coordination National Institute of Mental Health National Institutes of Health Co-Chair, ELSI Workshop Planning Committee |
| 8:45 | Setting the Stage Overview of ELSI Mildred Cho, PhD Professor, Department of Pediatrics Associate Director, Stanford Center for Biomedical Ethics Stanford School of Medicine Bridging Autism, Science and Society in the UK Elizabeth Pellicano, PhD Senior Lecturer, Centre for Research in Autism and Education (CRAE) Department of Psychology and Human Development Institute of Education, University of London Ethical Issues in Autism Research, As Seen by an Autistic Person John Elder Robison Author of Look Me in the Eye: My Life with Asperger 's and Be Different: Adventures of a Free-range Aspergian Adjunct Faculty, Department of Communication Sciences and Disorders Elms College Discussion 9:45-10:00 |
| 10:00 | ELSI Issues Related to Etiological and Biological ASD Research Chair: Holly Tabor, PhD Presentations 10:00-11:00: Understanding Ethical Implications of Genetic Testing and Research Holly Tabor, PhD Assistant Professor, Department of Pediatrics Division of Bioethics University of Washington School of Medicine Scholar, Treuman Katz Center for Pediatric Bioethics Ethical Issues in Etiological and Biological Research Jason Scott Robert, PhD Franca Oreffice Dean's Distinguished Professor in the Life Sciences Lincoln Associate Professor of Ethics in Biotechnology and Medicine Director, Bioethics, Policy, and Law Program Center for Biology and Society, School of Life Sciences, and Consortium for Science, Policy, and Outcomes Arizona State University Autism, Ethics, and the Communication of Scientific Findings in Eras of Uncertainty and Controversy Michael Yudell, PhD, MPH Associate Professor Drexel University School of Public Health Discussion 11:00-11:30 |
| 11:30 | Lunch |
| 12:30 p.m. | ELSI Issues Related to ASD Screening and Diagnosis Research Chair: Lonnie Zwaigenbaum, MD Presentations 12:30-1:30: Ethical Issues in the Conduct and Uptake of ASD Screening Research Lonnie Zwaigenbaum, MD Co-Director, Autism Research Centre Glenrose Rehabilitation Hospital Associate Professor, Department of Pediatrics University of Alberta Identifying and Communicating Meaningful Genetic Results Used in ASD Screening and Diagnosis Fiona Miller, PhD Associate Professor, Department of Health Policy, Management and Evaluation Joint Centre for Bioethics University of Toronto Lessons Learned from Newborn Screening for Fragile X Syndrome Don Bailey, PhD Distinguished Fellow RTI International Ethical Issues in Working with Adults with ASD in Research Catherine Lord, PhD Director, Institute for Brain Development New York-Presbyterian Hospital Weill Cornell Medical College and Columbia University Medical Center Discussion 1:30-2:00 |
| 2:00 | Break |
| 2:15 | ELSI Issues Related to ASD Intervention, Treatment and Services Research Chair: Paul Shattuck, PhD Presentations 2:15-3:15: The Impact of Genetic Risk Research on Clinical Practice Edwin Cook, MD Professor, Department of Psychiatry Director of Autism and Genetics Co-Director, Autism Center of Excellence Co-Director, Laboratory of Developmental Neuroscience Institute of Juvenile Research (IJR) University of Illinois at Chicago Politics, Prevalence, and the Public Interest Jeffrey Brosco, MD, PhD Professor of Clinical Pediatrics Associate Director, Mailman Center for Child Development University of Miami School of Medicine Effective Partnering with the Autistic Self-Advocacy Community to Advance Intervention and Services Research Christina Nicolaidis, MD, MPH Associate Professor of Medicine and Public Health & Preventive Medicine Co-Director, Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) Oregon Health & Science University Dilemmas of Omission in Research about Adults with an Autism Spectrum Disorder Paul Shattuck, PhD Assistant Professor, George Warren Brown School of Social Work Washington University in St. Louis Discussion 3:15-3:45 |
| 3:45 | Summary, Synthesis and Discussion Co-Chairs: Catherine Lord, PhD and Fiona Miller, PhD Summary/ Synthesis Presentations 3:45-4:15 Catherine Lord, PhD Fiona Miller, PhD Roundtable Discussion 4:15-5:00 To address the following core questions:
|
| 5:00 | Closing Comments and Adjournment Alice Kau, PhD |
Invited Workshop Discussants
Paula C. Durbin-Westby, Autistic Self Advocacy Network
Ilene Lainer, Executive Director, New York Center for Autism
Meeting may end prior to or later than 5:00 p.m. Eastern. Schedule subject to change.