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

Workshop Materials

Below you will find links to the materials for the workshop.

Documents

Articles Expand All  |  Collapse All

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] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21669896]

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] This link exits the Interagency Autism Coordinating Committee Web site
Should all children be screened for autism spectrum disorders?
American Family Physician Editorials: Controversies in Family Medicine. 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] This link exits the Interagency Autism Coordinating Committee Web site [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] This link exits the Interagency Autism Coordinating Committee Web site [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.This link exits the Interagency Autism Coordinating Committee Web site
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] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 18310190]
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.This link exits the Interagency Autism Coordinating Committee Web site
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] This link exits the Interagency Autism Coordinating Committee Web site
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] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 20234389]
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.This link exits the Interagency Autism Coordinating Committee Web site
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.This link exits the Interagency Autism Coordinating Committee Web site
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] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21658581]
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] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21701786]
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] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 17404137]
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] [PMID: 17873651]
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] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 21931335]
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] This link exits the Interagency Autism Coordinating Committee Web site [PMID: 19403506]
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.This link exits the Interagency Autism Coordinating Committee Web site


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