Documents
- Ethics of communicating scientific findings of autism risk. (PDF – 134 KB) Conference Materials – Case studies. Drexel University.
Articles
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][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]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]
- Campos-Outcalt D. No: screening is not ready for prime time. Am Fam Physician. 2011 Aug 15;84(4):377-8. [Full text]
Ethical and social implications of genetic testing for communication disordersArnos 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 issuesBailey 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 conditionsCook 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 challengesMarchant 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 participantsMiller 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-advocatesNicolaidis 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 researchPellicano 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.
- For full programme information of the "Autism, Ethics, and Society" conference and podcasts, visit: http://www.ucl.ac.uk/cpjh/autism
Evidence-based neuroethics for neurodevelopmental disordersRacine 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 autismSanders 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 diagnosticsScherer 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 perspectiveSilverman 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 researchTabor 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 challengesWalsh 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 infantsZwaigenbaum 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 projectZwaigenbaum 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.
Wednesday, September 28, 2011
NIH Workshop
Research into genetics and other areas raises difficult questions. On Monday, the National Institutes of Health held a workshop on the ethical, legal, and social implications of autism research. Conference materials include the following:
