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

Speaker Biosketches

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, This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site. and Be Different, Adventures of a Free-Range Aspergian. This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.

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 This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site. (John Wiley and Sons, 2004). Drs. Yudell and DeSalle also edited The Genomic Revolution: Unveiling The Unity Of Life This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site. (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, and 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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