Literature DB >> 21567986

Bridging autism, science and society: moving toward an ethically informed approach to autism research.

Elizabeth Pellicano1, Marc Stears.   

Abstract

Recent developments in the science of autism have provoked widespread unease among autism activists. Drawing on the findings of a major international gathering of researchers, ethicists, and activists, this paper presents the first major analysis of the ethical questions arising from this unease. We outline the scientific developments that have provoked the most discomfort, analyze the response to these developments from within and without the autism community, and trace the current state of the ethical debate. Having done so, we contend that these ethical questions are unlikely to be resolved as they depend on fundamentally conflicting assumptions about the nature and desirability of neurocognitive difference. We conclude by arguing for a new range of democratic mechanisms that could enable the scientific community, autistics, and other concerned parties to respond collectively to such entrenched ethical disputes.
Copyright © 2011, International Society for Autism Research, Wiley-Liss, Inc.

Entities:  

Mesh:

Year:  2011        PMID: 21567986     DOI: 10.1002/aur.201

Source DB:  PubMed          Journal:  Autism Res        ISSN: 1939-3806            Impact factor:   5.216


  30 in total

Review 1.  In search of biomarkers for autism: scientific, social and ethical challenges.

Authors:  Pat Walsh; Mayada Elsabbagh; Patrick Bolton; Ilina Singh
Journal:  Nat Rev Neurosci       Date:  2011-09-20       Impact factor: 34.870

2.  Genetic testing and autism: Tutorial for communication sciences and disorders.

Authors:  Laura S DeThorne; Stephanie Ceman
Journal:  J Commun Disord       Date:  2018-05-28       Impact factor: 2.288

3.  "Set in Stone" or "Ray of Hope": Parents' Beliefs About Cause and Prognosis After Genomic Testing of Children Diagnosed with ASD.

Authors:  Marian Reiff; Eva Bugos; Ellen Giarelli; Barbara A Bernhardt; Nancy B Spinner; Pamela L Sankar; Surabhi Mulchandani
Journal:  J Autism Dev Disord       Date:  2017-05

4.  "Peas in a pod": Oral History Reflections on Autistic Identity in Family and Community by Late-Diagnosed Adults.

Authors:  Rozanna Lilley; Wenn Lawson; Gabrielle Hall; Joanne Mahony; Hayley Clapham; Melanie Heyworth; Samuel Arnold; Julian Trollor; Michael Yudell; Elizabeth Pellicano
Journal:  J Autism Dev Disord       Date:  2022-07-14

5.  Ethical considerations in conducting research on autism spectrum disorders in low and middle income countries.

Authors:  Tamara C Daley; Nidhi Singhal; Vibha Krishnamurthy
Journal:  J Autism Dev Disord       Date:  2013-09

6.  Understanding parents' concerns about their children with autism taking public school transportation in Los Angeles County.

Authors:  Amber M Angell; Olga Solomon
Journal:  Autism       Date:  2017-02-01

7.  Guidelines for conducting research studies with the autism community.

Authors:  Emma Gowen; Rachel Taylor; Thomas Bleazard; Anat Greenstein; Peter Baimbridge; Daniel Poole
Journal:  Autism Policy Pract       Date:  2019-09-09

8.  Mixed emotions: the contribution of alexithymia to the emotional symptoms of autism.

Authors:  G Bird; R Cook
Journal:  Transl Psychiatry       Date:  2013-07-23       Impact factor: 6.222

9.  Prevalence of clinically and empirically defined talents and strengths in autism.

Authors:  Andrée-Anne S Meilleur; Patricia Jelenic; Laurent Mottron
Journal:  J Autism Dev Disord       Date:  2015-05

10.  Veridical mapping in savant abilities, absolute pitch, and synesthesia: an autism case study.

Authors:  Lucie Bouvet; Sophie Donnadieu; Sylviane Valdois; Chantal Caron; Michelle Dawson; Laurent Mottron
Journal:  Front Psychol       Date:  2014-02-18
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