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NIH Workshop: Ethical, Legal and Social Implications (ELSI) of Autism Research - September 26, 2011

meeting announcement Announcement

National Institute of Mental Health Special Lecture for Autism Awareness Month Autisms Powerful Affinities: Prison or Pathway? - April 24, 2014, 4:00 p.m. to 5:00 p.m. Eastern

Topic Topic Description
Date: Monday, September 26, 2011
Time: 8:30 a.m. to 5:00 p.m. Eastern
Agenda: The National Institutes of Health's Office of Autism Research Coordination (OARC) and the Autism Coordinating Committee (ACC) are sponsoring the workshop: Ethical, Legal and Social Implications of Autism Research. Leading community stakeholders, bioethicists, and scientific researchers will address topics such as ethical implications of genetic and environmental risk factor research, ethical issues in genetic testing, risk communication, ethical issues in childhood and adult diagnosis, and effective partnering with families and the self advocacy community to advance treatment/intervention and services research.

The goal of the workshop will be to define possible approaches for conducting future studies of ethical, legal, and social implications of ASD research, taking into consideration how these types of issues have been approached in related medical conditions.

To view the agenda, click here.
Place: Bethesda North Marriott Hotel & Conference Center
5701 Marinelli Road
Bethesda, Maryland 20852
Map and Directions Go to website disclaimer
Webcast Live: http://nih.granicus.com/MediaPlayer.php?event_id=67 Go to website disclaimer
Conference Call Access: Dial: 888-390-3404
Access code: 6003464
Materials: Workshop materials
Cost: The meeting is free and open to the public.
Pre-Registration: Pre-registration is strongly recommended, but PRE-REGISTRATION DOES NOT GUARANTEE YOU A SEAT. Seating is first come, first served, with expedited check-in for those pre-registered. Seating is limited to room capacity.
Access: On-site parking available with validation
2 1/2 blocks from the White Flint Metro (Red Line)
Contact Person: Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, Room 8185a
Rockville, Maryland 20892-9669
Phone: 301-443-6040
Email: IACCPublicInquiries@mail.nih.gov
Please Note: This workshop will also be open to the public through a conference call. Members of the public who participate using the conference call phone number will be able to listen to the discussion but will not be heard. If you experience any technical problems with the conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Individuals who participate in person or by using these electronic services and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the Contact Person listed on this notice at least 7 days prior to the meeting.

As a part of security procedures, attendees should be prepared to present a photo ID at the meeting registration desk during the check-in process. Pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered. Please note: Online pre-registration will close by 5:00 p.m. the day before the meeting. After that time, registration will have to be done onsite the day of the meeting.

Schedule for meeting is subject to change.

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meeting agenda Agenda
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

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meeting speakers Speakers

Setting the Stage

Mildred Cho, PhD

Professor
Stanford Department of Pediatrics
and Associate Director of the Stanford Center for Biomedical Ethics

Dr. Mildred Cho is Professor of Pediatrics in the Division of Medical Genetics of the Department of Pediatrics at Stanford University, Associate Director of the Stanford Center for Biomedical Ethics, and Director of the Center for Integration of Research on Genetics and Ethics She received her BS in Biology in 1984 from the Massachusetts Institute of Technology and her PhD in 1992 from the Stanford University Department of Pharmacology. Her post-doctoral training was in Health Policy as a Pew Fellow at the Institute for Health Policy Studies at the University of California, San Francisco and at the Palo Alto Veterans Affairs Center for Health Care Evaluation. Before coming to Stanford, Dr. Cho was Assistant Professor of Bioethics in the Center for Bioethics and the Department of Molecular and Cellular Engineering at the University of Pennsylvania School of Medicine. She is a member of national advisory boards for the National Human Genome Research Institute, the Genome X-Prize, and the Board of Reviewing Editors of Science magazine. She has also served as a member of the working group on synthetic genomes for the U.S. Department of Energy. Dr. Cho's major areas of interest are the ethical and social impacts of genetic research and its applications, and how conflicts of interest affect the conduct of academic biomedical research. Her current research projects examine ethical and social issues in research on genetics of behavior, the human microbiome, human genetic variation and natural selection.

Elizabeth Pellicano, PhD

Senior Lecturer at the Centre for Research in Autism and Education (CRAE)
Department of Psychology and Human Development
Institute of Education, London

Dr. Liz Pellicano is Senior Lecturer at the Centre for Research in Autism and Education at the Institute of Education, London. She trained as an educational psychologist in Perth, Australia, where she also completed her PhD on the cognitive profile of children with autism, before becoming a Research Fellow in Psychiatry at the University of Oxford. Her current research uses experimental and especially psychophysical methods to understand the way that people with autism perceive and interpret the world around them. She is developing a new theoretical account of autistic perception and its relationship to the core behavioral features using neurocomputational methods. She has long had an interest in involving people with autism and their families more directly in the research process. To this end, she organized a major international conference in London in the summer of 2010 bringing together internationally respected scientists, autistic self-advocates, clinicians, and family support groups.

John Elder Robison

Author of Look Me in the Eye: My Life with Asperger's and Be Different: Adventures of a Free-range Aspergian and Adjunct Faculty
Department of Communication Sciences and Disorders
Elms College

John Elder Robison is an Aspergian who grew up in the 1960s before the Asperger diagnosis came into common use. After a valiant struggle, John dropped out of high school, but he'd been fortunate to find two of his great life interests – music and electronics. At age sixteen, John joined his first band as a sound engineer. Within a few years he was building equipment for Pink Floyd's sound company, touring the hockey rinks of Canada with April Wine, and creating the signature special effects guitars for KISS. John went on to design sound effects and other circuits for some of the most popular electronic games and toys of the era before moving into more conventional engineering management. In the late 1980s, John left electronics for a new career . . . cars. From a modest but resolute origin in his back yard, his J E Robison Service Co grew to be one of the largest independent restoration and service specialists for BMW, Bentley, Jaguar, Land Rover, Mercedes, and Rolls Royce cars. The company has become one of the top-ranked Bosch Car Service centers in North America. When he's not at Robison Service, John speaks about being different at schools, conferences, and anywhere else people might listen. He serves as an adjunct faculty in the department of Communication Sciences and Disorders at Elms College in Chicopee, Massachusetts. John has served as a panel member for the Institute for Autism Research, the Centers for Disease Control and Prevention, the National Institutes of Health, and Autism Speaks. John is involved in TMS (transcranial magnetic stimulation) autism research at Harvard Medical School and Beth Israel Deaconess Medical Center, and serves on the advisory board for Mass General Hospital's YouthCare program. John is the author of Look Me in the Eye, My Life with Asperger's, and Be Different, Adventures of a Free-Range Aspergian.

ELSI Issues Related to Etiological and Biological ASD Research

Holly Tabor, PhD

Assistant Professor
Department of Pediatrics
Division of Bioethics
University of Washington School of Medicine and Scholar at the Treuman Katz Center for Pediatric Bioethics

Dr. Holly K. Tabor is an assistant professor of pediatrics in the Division of Bioethics at University Washington School of Medicine and the Treuman Katz Center for Pediatric Bioethics. She is also an adjunct assistant professor in the Department of Bioethics and Humanities at the University of Washington. She earned her PhD in epidemiology, with a minor in genetics, at Stanford University School of Medicine. She was a senior scientist at the Stanford Human Genome Center, leading a group conducting candidate gene research on complex traits. She completed her postdoctoral training in bioethics at the Stanford Center for Biomedical Ethics, in the Center for the Research on Integration of Genetics and Ethics. She is the recipient of a K99/R00 Pathway to Independence award from the National Human Genome Research Institute at NIH on "Ethical and Social Issues in the Study of the Genetics of Complex Traits." She conducts research on ethical issues in genetic research, specifically issues in exome and whole genome sequencing and in pediatric genetic research. Current projects include studies of best practices for informed consent and return of results for exome and whole genome sequencing and genotype driven recontact. She is also conducting studies characterizing the perspectives of parents and adolescents across different contexts of pediatric genetic research about ethical and social issues.

Jason Scott Robert, PhD

Franca Oreffice Dean's Distinguished Professor in the Life Sciences and Lincoln Associate Professor of Ethics in Biotechnology and Medicine in the School of Life Sciences
Director of the Bioethics, Policy, and Law Program in the Center for Biology and Society, and faculty in the Consortium for Science, Policy, and Outcomes
Arizona State University

Dr. Jason Robert is the Franca Oreffice Dean's Distinguished Professor in the Life Sciences and the Lincoln Associate Professor of Ethics in Biotechnology and Medicine in the School of Life Sciences at Arizona State University (ASU). He conducts research and teaching at the intersection of bioethics and the philosophy of science. His research is currently focused on how scientists justify and undertake research that may be considered "controversial," and he has special interests in genetics, development, and neuroscience. Dr. Robert directs the Bioscience Ethics, Policy, and Law Program (BPL) in the Center for Biology and Society at ASU, administering the Biology MS and PhD concentrations in BPL, as well as the Biomedical and Health Ethics track of the MA in Applied Ethics and the Professions. He is also a faculty member in the Consortium for Science, Policy, and Outcomes, and serves on the ethics committees of the Hospice of the Valley and Phoenix Children's Hospital. Dr. Robert is Associate Editor for public health ethics of the Canadian Journal of Public Health, a co-editor for Philosophy of Biology of the Stanford Encyclopedia of Philosophy, and a member of the editorial board of Biological Theory.

Michael Yudell, PhD, MPH

Associate Professor
Drexel University School of Public Health

Dr. Michael Yudell is an Associate Professor at the Drexel University School of Public Health where he studies the history of public health, medicine, and science, and tries to understand how these histories impact current day health challenges. He received his BA from Tufts University, an MPH from the Mailman School of Public Health at Columbia University, and a PhD from Columbia University. He is the author with Dr. Rob DeSalle of Welcome to the Genome: A User's Guide to the Genetic Past, Present, and Future (John Wiley and Sons, 2004). Drs. Yudell and DeSalle also edited The Genomic Revolution: Unveiling The Unity Of Life (Joseph Henry Press of the National Academy of Sciences, 2001). He is currently writing two books: Ages of Uncertainty: Autism Spectrum Disorders and the Search for Cause and Cure, which explores the history of autism and the changing explanations for the disorder from the 1940s through the present, and a completely revised edition of Welcome to the Genome. Dr. Yudell just completed the forthcoming Making Race: Biology and the Evolution of the Race Concept in 20th Century American Thought. Dr. Yudell's work currently focuses on historical and ethical dimensions of public health research and practice, with a current emphasis on the history and ethical issues around autism spectrum disorders.

ELSI Issues Related to ASD Screening and Diagnosis Research

Lonnie Zwaigenbaum, MD

Co-Director of the Autism Research Centre at Glenrose Rehabilitation Hospital
Associate Professor, Department of Pediatrics
University of Alberta

Dr. Lonnie Zwaigenbaum completed his pediatric training at Queen's University and his clinical fellowship in developmental pediatrics at The Hospital for Sick Children in Toronto. He completed a research fellowship and Masters Degree in Health Research Methodology at McMaster University. Dr. Zwaigenbaum's research focuses on early behavioral and biological markers and early developmental trajectories in children with autism and related disorders. He currently holds an Alberta Heritage Foundation for Health Research (AHFMR) Health Scholar and Canadian Institutes for Health Research (CIHR) New Investigator Award. Dr. Zwaigenbaum is currently Associate Professor in the Department of Pediatrics at the University of Alberta and the co-director of the Autism Research Centre based at the Glenrose Rehabilitation Hospital. He is a past chair of an international research consortium studying early development in autism in high-risk infants.

Fiona Miller, PhD

Associate Professor, Department of Health Policy
Management and Evaluation
Joint Centre for Bioethics
University of Toronto

Dr. Fiona A. Miller is an Associate Professor in the Department of Health Policy, Management and Evaluation and a Member of the Joint Centre for Bioethics at the University of Toronto. She holds a New Investigator Award from the Institute of Health Services and Policy Research of the Canadian Institutes of Health Research (CIHR). Dr. Miller leads a research program centered on health technology policy, especially for diagnostic and screening technologies in the child health context. She is also involved in policy development in these areas through the Provincial Maternal-Child Screening Committee of the Provincial Council for Maternal and Child Health, the Ontario Expert Panel on Pharmacogenetics, the Institute Advisory Board of the CIHR Institute of Genetics and related consultations.

Don Bailey, PhD

Distinguished Fellow
RTI International

Dr. Don Bailey is a Distinguished Fellow at RTI International. For 27 years, he was on the faculty of the University of North Carolina at Chapel Hill, where he was a W.R. Kenan, Jr. Distinguished Professor and, for 14 years, Director of the Frank Porter Graham Child Development Institute. Dr. Bailey's research addresses early identification and early intervention for children with disabilities, as well as family adaptation to disability. For the past 20 years, much of his work has focused on children with fragile X syndrome (FXS), the leading inherited cause of intellectual impairment, and their families. Currently, he directs several projects funded by the National Institutes of Health and the Centers for Disease Control and Prevention on various aspects of fragile X and broader issues surrounding the ethical, legal, and social consequences of genetic discoveries and the disclosure of genetic information to families, including newborn screening. Recently he was appointed to serve a 4-year term on the Department of Health and Human Services Secretary's Advisory Committee on Heritable Disorders in Newborns and Children.

Catherine Lord, PhD

Director of the Institute for Brain Development
New York-Presbyterian Hospital
Weill Cornell Medical College and Columbia University Medical Center

In 2011, Dr. Catherine Lord was named Director of the Institute for Brain Development at New York-Presbyterian Hospital. Dr. Lord currently holds faculty appointments at Weill Cornell Medical College and Columbia University Medical Center. Previously, she was the Director of the Autism & Communication Disorders Center, Professor of Psychology and Psychiatry, and Senior Scientist at the Center for Human Growth and Development at the University of Michigan. She is a clinical psychologist with specialties in diagnosis, social and communication development and intervention in autism spectrum disorders. She is renowned for her work in longitudinal studies of children with autism as well as for her role in developing the autism diagnostic instruments used in both practice and in research worldwide today. Dr. Lord has also worked at the University of North Carolina, University of Minnesota, University of Alberta, the London Medical Research Council Child and Adolescent Psychiatry Unit, Harvard University (Children's Hospital) and University of Chicago.

ELSI Issues Related to ASD Intervention, Treatment, and Services Research

Edwin Cook, MD

Professor
Department of Psychiatry
Director of Autism and Genetics, Co-Director of the Autism Center of Excellence and Co-Director of the Laboratory of Developmental Neuroscience
Institute of Juvenile Research (IJR)
University of Illinois at Chicago

After graduating from Southern Methodist University, Dr. Ed Cook received his medical degree from the University of Texas Medical Branch at Galveston in 1981. He trained in psychiatry and child and adolescent psychiatry at the University of Chicago from his internship through appointment as Professor in 2000. In 2005, he moved to the Institute of Juvenile Research (IJR) in the Department of Psychiatry at the University of Illinois at Chicago (UIC) where he was appointed Professor of Psychiatry and Director of Autism and Genetics. He directs the Laboratory of Developmental Neuroscience with Dr. Suma Jacob and the Autism Center of Excellence with Dr. John Sweeney. With many colleagues at UIC and beyond, he conducts pharmacological, genetic and pharmacogenetic research of childhood onset neuropsychiatric disorders, including attention-deficit hyperactivity disorder, obsessive-compulsive disorder, autism, and maternal duplication of 15q11-q13 syndrome. His work is dedicated to the memory of his brother, Wade Cook.

Jeffrey Brosco, MD, PhD

Professor of Clinical Pediatrics, and Associate Director of the Mailman Center for Child Development
University of Miami School of Medicine

Dr. Jeffrey Brosco completed an MD and a PhD (history of medicine) at the University of Pennsylvania. He served as chief resident after training in pediatrics at the University of Miami/Jackson Memorial Hospital, and he is board-certified in General Pediatrics and in Developmental-Behavioral Pediatrics. He completed his tenure as a Robert Wood Johnson Generalist Faculty Scholar in 2003, and he continues to teach and practice both general pediatrics and developmental pediatrics. He received the Outstanding Clinician Award from the Center for Autism and Related Disabilities (CARD), University of Miami & Nova Southeastern University (UM-NSU), in 2010. Dr. Brosco's previous research includes an analysis of the history of health care for children, and his current project focuses on social history and public policy trends in health care for persons with developmental disabilities, including autism. He has served on numerous local, state, and national health policy planning groups, including the Autism Spectrum Disorders Workgroup, Part C Early Intervention, Florida; Governor's Task Force on Autism Spectrum Disorders, Florida; Co-Chair of the Ethics-Legal Workgroup, Newborn Screening Translational Research Network, American College of Medical Genetics; and Co-Chair of the Long-Term Cognitive Outcomes and Follow-up, National Institutes of Health Phenylketonuria Planning Group.

Christina Nicolaidis, MD, MPH

Associate Professor of Medicine and Public Health & Preventive Medicine, and Co-Director of the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE)
Oregon Health & Science University

Dr. Christina Nicolaidis, MD, MPH, is an Associate Professor of Medicine and Public Health & Preventive Medicine at Oregon Health & Science University (OHSU). She has focused much of her career on using a Community-Based Participatory Research (CBPR) approach to improve the health and healthcare of marginalized communities. Dr. Nicolaidis became interested in autism due to her own son's diagnosis in 2004 As she began to interact with the community of autistic self-advocates, she realized that they shared many of the same frustrations with research and healthcare as her African-American and Latino community partners She thus co-founded and now co-directs the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE), a community-academic partnership comprised of researchers, adults on the autistic spectrum, family members, healthcare workers, and disability services providers. AASPIRE is currently conducting a National Institutes of Mental Health (NIMH)-funded CBPR project to improve primary care services for adults on the autistic spectrum She is also the site-principal investigator of a Centers for Disease Control and Prevention-funded CBPR project to study the relationship between violence and health in people developmental disabilities, including autism. She continues to serve as an investigator on other health services research projects related to racial health disparities, violence, depression, and primary care services. Dr. Nicolaidis is on the National Advisory Committee of Autism NOW, the healthcare committee of the Oregon Commission on Autism Spectrum Disorders, and is a standing member of the NIMH Services Research in Non-Specialty Settings Review Group She also teaches and practices Internal Medicine at OHSU, where she directs the Samuel Wise Fellowship in Internal Medicine.

Paul Shattuck, PhD

Assistant Professor, George Warren Brown School of Social Work, Washington University in St. Louis

Dr. Paul Shattuck is an Assistant Professor at the George Warren Brown School of Social Work at Washington University in St. Louis. Dr. Shattuck conducts research aimed at improving systems of care and services for people with autism and their families. He is especially interested in two key service transitions: getting a diagnosis in early childhood and exiting high school in adolescence. Prior to his appointment at the Brown School, Dr. Shattuck was a National Institutes of Health post-doctoral fellow at the University of Wisconsin's Waisman Center. He received a PhD in Social Work from the University of Wisconsin-Madison, conducting research on the prevalence of autism in special education.

Invited Workshop Discussants

Paula C. Durbin-Westby

Autistic Self Advocacy Network

Paula C. Durbin-Westby has worked in a variety of capacities with the Autistic Self-Advocacy Network (ASAN). The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for Autistic people. Ms. Durbin-Westby works with ASAN on public policy advocacy, educational issues, media and community outreach. Ms. Durbin-Westby is also an autistic community member of the Academic Autistic Partnership In Research and Education (AASPIRE). She is a graduate of the Virginia Board for People with Disabilities' Partners in Policymaking Class of 2009. She is also Secretary of the cross-disability organization Virginia Advocates United Leading Together (VAULT). Ms. Durbin-Westby has testified at numerous Interagency Autism Coordinating Committee (IACC) meetings, calling for research into supports and services throughout the lifespan, urging the National Institutes of Mental Health to include autistic individuals as full partners in research projects. She gave an invited presentation to the IACC full committee on "Ethical Concerns in Autism Research" in November 2008 and participated in the IACC's Scientific Workshop in 2009. Ms. Durbin-Westby has been self-employed in the publishing industry for 15 years, as an indexer of books in the humanities, social sciences, and health sciences. She holds a Bachelor of Music in organ performance from the University of Richmond and a Bachelor of Arts in English literature from University of Maryland, College Park. Ms. Durbin-Westby is also the parent of a nine year-old boy and is concerned with issues relating to Autistic parents and children.

Ilene Lainer

Executive Director of the New York Center for Autism

Ilene Lainer is a board member and Executive Director of the New York Center for Autism (NYCA) which she co-founded in 2003. In 2005, she co-founded NYCA Charter School, served as its first Board President from 2005-2007 and continues to serve as a Trustee. NYCA Charter School is the only charter school in New York State dedicated exclusively to serving children with a disability. Under her leadership, NYCA helped Hunter College open its Autism Training Center which provides education and training to graduate level professionals so they may become certified in applied behavior analysis. In 2008, through NYCA, Ilene opened the Boost! after-school programs in partnership with community organizations in New Jersey, Manhattan, and Long Island. Ilene is a Steering Committee Member of Advancing Futures for Adults with Autism (AFAA) and currently serves as Chair of the AFAA Employment Committee. She also participated at the July 2010 Congressional Briefing Session in Washington D.C. hosted by AFAA. NYCA recently partnered with NewYork-Presbyterian Hospital and its affiliated medical schools to form the Institute for Brain Development (IBD), where Ilene will sit on the IBD Advisory Committee. NYCA has future plans to develop partnerships that will create vocational training, employment opportunities, recreational and residential programs while simultaneously considering the importance of community integration, independence, and safety. The overarching goal is to give adults affected with ASDs the opportunity to live joyful, financially independent, and productive lives given their respective abilities. Ilene is a former attorney with nearly 20 years specializing in labor and employment on behalf of management. During her partnership, she represented large and small employers ranging from multi-national corporations to small family owned businesses. Ilene serves on the board of ABILIS, a community based organization that serves people in Fairfield County, CT with developmental disabilities including autism. Ilene has co-authored and edited articles and publications on services for adults with autism. Ilene and her husband reside in New York City with their two sons, one of whom has autism.


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meeting materials Materials

Ethics of communicating scientific findings of autism risk

Early autism detection: Are we ready for routine screening?

  • Al-Qabandi M, Gorter JW, Rosenbaum P. Early autism detection: Are we ready for routine screening? Pediatrics. 2011 Jul;128(1):e211-7. [Full text]
  • Response letter: Why it is important that screening for autism be provided in routine pediatric care. Response letter to: Early autism detection: Are we ready for routine screening? Dawson G, Fein D, Rogers S, Zwaigenbaum L. Pediatrics. Published online 2011 Jun 16. [Full text]

Should all children be screened for autism spectrum disorders?

  • Lipkin PH, Hyman SL. Yes: merging science, policy, and practice. Am Fam Physician. 2011 Aug 15;84(4):361-7. [Full text] [PMID: 21842783]
  • Campos-Outcalt D. No: screening is not ready for prime time. Am Fam Physician. 2011 Aug 15;84(4):377-8. [Full text] [PMID: 21842784]

Ethical and social implications of genetic testing for communication disorders

  • Arnos KS. Ethical and social implications of genetic testing for communication disorders. J Commun Disord. 2008 Sep-Oct;41(5):444-457. [PMID: 18452941]
  • Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "purchase" button on this webpage.

Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues

  • Bailey DB Jr, Skinner D, Davis AM, Whitmarsh I, Powell, C. Ethical, legal, and social concerns about expanded newborn screening: fragile X syndrome as a prototype for emerging issues. Pediatrics. 2008 Mar;121(3);e693-704. [Full text]

Copy-number variations associated with neuropsychiatric conditions

  • Cook EH Jr, Scherer SW. Copy-number variations associated with neuropsychiatric conditions. Nature. 2008 Oct 16;455(7215):919-23. [PMID: 18923514]
  • Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "Register now" button on this webpage.

Genetic testing for autism predisposition: Ethical, legal and social challenges

  • Marchant GE, Robert JS. Genetic testing for autism predisposition: Ethical, legal and social challenges. Houston Journal of Health Law & Policy. 2009 9(2):203-35. [Full text]

What is a meaningful result? Disclosing the results of genomic research in autism to research participants

  • Miller FA, Hayeems RZ, Bytautas JP. What is a meaningful result? Disclosing the results of genomic research in autism to research participants. Eur J Hum Genet. 2010 Aug;18(8):867-71. [Full text]

Collaboration strategies in non-traditional CBPR partnerships: Lessons from an academic-community partnership with autistic self-advocates

  • Nicolaidis C, Raymaker D, McDonald K, Dern S, Ashkenazy E, Boisclair WC, Robertson S, Baggs A. Collaboration strategies in non-traditional CBPR partnerships: Lessons from an academic-community partnership with autistic self-advocates. Progress in Community Health Partnerships. 2011 5(2);143-150. [PMID: 21623016]
  • Please note that this article is published in a journal with access to subscribers only. For more information regarding access to this article, please contact the Johns Hopkins University Press at jrnlcirc@press.jhu.edu, 1-800-548-1784, or 410-516-6987.

Bridging autism, science and society: Moving towards an ethically-informed approach to autism research

  • Pellicano E, Stears M. Bridging autism, science and society: Moving towards an ethically-informed approach to autism research. Autism Res. 2011 Aug;4(4):271-82. [PMID: 21567986]
  • Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "Register now" button on this webpage.

Evidence-based neuroethics for neurodevelopmental disorders

  • Racine E, Bell E, Di Pietro NC, Wade L, Illes J. Evidence-based neuroethics for neurodevelopmental disorders. Semin Pediatr Neurol. 2011 Mar;18(1):21-5. [PMID: 21575837]
  • Please note that this article is published in a journal with access to subscribers only. Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "purchase" button on this webpage.

Multiple recurrent de novo CNVs, including duplications of the 7q11.23 Williams syndrome region, are strongly associated with autism

  • Sanders SJ, Ercan-Sencicek AG, Hus V, Luo R, Murtha MT, Moreno-De-Luca D, Chu SH, Moreau MP, Gupta AR, Thomson SA, Mason CE, Bilguvar K, Celestino-Soper PB, Choi M, Crawford EL, Davis L, Wright NR, Dhodapkar RM, DiCola M, DiLullo NM, Fernandez TV, Fielding-Singh V, Fishman DO, Frahm S, Garagaloyan R, Goh GS, Kammela S, Klei L, Lowe JK, Lund SC, McGrew AD, Meyer KA, Moffat WJ, Murdoch JD, O'Roak BJ, Ober GT, Pottenger RS, Raubeson MJ, Song Y, Wang Q, Yaspan BL, Yu TW, Yurkiewicz IR, Beaudet AL, Cantor RM, Curland M, Grice DE, Günel M, Lifton RP, Mane SM, Martin DM, Shaw CA, Sheldon M, Tischfield JA, Walsh CA, Morrow EM, Ledbetter DH, Fombonne E, Lord C, Martin CL, Brooks AI, Sutcliffe JS, Cook EH Jr, Geschwind D, Roeder K, Devlin B, State MW. Multiple recurrent de novo CNVs, including duplications of the 7q11.23 Williams syndrome region, are strongly associated with autism. Neuron. 2011 Jun 9;70(5):863-85. [Full text]

Risk factors for autism: translating genomic discoveries into diagnostics

  • Scherer SW, Dawson G. Risk factors for autism: translating genomic discoveries into diagnostics. Hum Genet. 2011 130:123-48. [Full text]

Understanding autism: Parents and pediatricians in historical perspective

  • Silverman C, Brosco JP. Understanding autism: Parents and pediatricians in historical perspective. Arch Pediatr Adolesc Med. 2007 Apr;161(4):392-8. [Full text]

Ethical implications of array comparative genomic hybridization in complex phenotypes: points to consider in research

  • Tabor HK, Cho MK. Ethical implications of array comparative genomic hybridization in complex phenotypes: points to consider in research. Genet Med, 2007 Sep;9(9):626-31. [Full text]

In search of biomarkers for autism: scientific, social, and ethical challenges

  • Walsh P, Elsabbagh M, Bolton P, Singh I. In search of biomarkers for autism: scientific, social, and ethical challenges. Nat Rev Neurosci. 2011 Sep 20;12(10):603-12. [Full text]

Clinical assessment and management of toddlers with suspected autism spectrum disorder: insights from studies of high-risk infants

  • Zwaigenbaum L, Bryson S, Lord C, Rogers S, Carter A, Carver L, Chawarska K, Constantino J, Dawson G, Dobkins K, Fein D, Iverson J, Klin A, Landa R, Messinger D, Ozonoff S, Sigman M, Stone W, Tager-Flusberg H, Yirmiya N. Clinical assessment and management of toddlers with suspected autism spectrum disorder: insights from studies of high-risk infants. Pediatrics. 2009 May;123(5):1383-91. [Full text]

The NeuroDevNet autism spectrum disorders demonstration project

  • Zwaigenbaum L, Scherer S, Szatmari P, Fombonne E, Bryson SE, Hyde K, Anognostou E, Brian J, Evans A, Hall G, Nicholas D, Roberts W, Smith I, Vaillancourt T, Volden J. The NeuroDevNet autism spectrum disorders demonstration project. Semin Pediatr Neurol. 2011 Mar;18(1):40-8. [PMID: 21575840]
  • Please note that this article is published in a journal with access to subscribers only. To purchase a copy of this article, please click on the "purchase" button on this webpage.

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meeting slides Slides
Presentation Presenter(s)
Overview of ELSI (PDF – 674 KB) 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 (PDF – 200 KB) 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 (PDF – 376 KB) 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
Understanding Ethical Implications of Genetic Testing and Research (PDF – 672 KB) 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 (PDF – 485 KB) 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 (PDF – 206 KB) Michael Yudell, PhD, MPH, Associate Professor, Drexel University School of Public Health
Ethical Issues in the Conduct and Uptake of ASD Screening Research (PDF – 405 KB) 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 (PDF – 206 KB) 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 (PDF – 646 KB) Don Bailey, PhD, Distinguished Fellow, RTI International
Ethical Issues in Working with Adults with ASD in Research (PDF – 931 KB) Catherine Lord, PhD, Director, Institute for Brain Development, New York-Presbyterian Hospital, Weill Cornell Medical College and Columbia University Medical Center
The Impact of Genetic Risk Research on Clinical Practice (PDF – 143 KB) 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 (PDF – 450 KB) 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
(PDF – 457 KB)
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
(PDF – 177 KB)
Paul Shattuck, PhD, Assistant Professor, George Warren Brown School of Social Work, Washington University in St. Louis

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meeting videocast Webcast

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