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NIH Workshop: Ethical, Legal and Social Implications of Autism Research (ELSI), September 26, 2011, 8:30 a.m. to 5:00 p.m. Eastern

Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road
Bethesda, Maryland 20852

Map and Directions This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.

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 This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site. 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:
  1. What ELSI issues are common to research in autism and other complex disorders?
  2. Are there lessons learned from ELSI research in other neurodevelopmental disorders or other complex genetic conditions that can be applied to autism?
  3. What ELSI issues are unique to autism research?
  4. What is needed to heighten awareness of ELSI issues, and approaches to address those issues, in the autism research community?
  5. What ELSI issues in autism require targeted research?
  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.



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