Aperçu: G.M.
La
reconnaissance accrue et la prévalence déclarée des troubles du spectre
de l'autisme (TSA) combinés à l'impact sociétal et clinique associé
exigent un large dialogue communautaire de base sur les problèmes
éthiques et sociaux liés au traitement. Dans
ces guides de Stony Brook, qui ont été développées au cours
d'une année complète de dialogue communautaire (2010-2011) avec des
personnes, des familles et des professionnels concernés, nous
identifions et discutons des sujets de préoccupation primordiale pour le TSA : objectifs et satisfaction du traitement et bonheur , justice distributive, gestion des espoirs désespérés d'une cure, responsabilités des frères et sœurs, intimité et sexe,
l'éthique du diagnostic et l'éthique de la recherche.
Les guides ne
reposent pas sur l'imposition d'une expertise professionnelle «de haut
en bas», mais plutôt sur une attention de base «ascendante» à la voix
des personnes et des familles touchées par l'expérience. Ces guides peuvent éclairer la pratique clinique, mais ils sont également significatifs pour la conversation sociale plus
large qui émerge sur le traitement des personnes avec un diagnostic de TSA.
HEC Forum. 2017 Apr 10. doi: 10.1007/s10730-017-9320-9.
A Grassroots Community Dialogue on the Ethics of the Care of People with Autism and Their Families: The Stony Brook Guidelines
Author information
- 1
- Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY, USA. Stephen.Post@StonyBrookMedicine.edu
- 2
- Department of Family, Population and Preventive Medicine, Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University School of Medicine, HSC Level 3, Rm 080, Stony Brook, NY, 11794-8335, USA. Stephen.Post@StonyBrookMedicine.edu.
- 3
- The Cody Center for Autism and Developmental Disabilities, Stony Brook University, Stony Brook, NY, USA.
- 4
- Center for Medical Humanities, Compassionate Care, and Bioethics, Stony Brook University, Stony Brook, NY, USA.
Abstract
The increased recognition and reported prevalence of autism
spectrum disorders (ASD) combined with the associated societal and
clinical impact call for a broad grassroots community-based dialogue on
treatment related ethical and social issues. In these Stony Brook
Guidelines, which were developed during a full year of community
dialogue (2010-2011) with affected individuals, families, and
professionals in the field, we identify and discuss topics of paramount
concern to the ASD constituency: treatment goals and happiness,
distributive justice, managing the desperate hopes for a cure, sibling
responsibilities, intimacy and sex, diagnostic ethics, and research
ethics. The members of the dialogue core committee included doctors,
ethicists, administrators, social workers, ministers, disability
experts, and many family members of individuals with autism
who were especially engaged in community activities on behalf of their
constituency, including siblings, parents, and grandparents. Our
guidelines are not based on "top-down" imposition of professional
expertise, but rather on a "bottom-up" grass roots attention to the
voices of affected individuals and families speaking from experience.
These guidelines can inform clinical practice, but they also are
meaningful for the wider social conversation emerging over the treatment
of individuals with ASD.
- PMID: 28397033
- DOI: 10.1007/s10730-017-9320-9
