A Grassroots Community Dialogue on the Ethics of the Care of People with Autism and Their Families: The Stony Brook Guidelines
| Autor: | Stephen G. Post, Carla C. Keirns, Virginia Isaacs Cover, John Pomeroy, Michael L. Dorn |
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| Rok vydání: | 2017 |
| Předmět: |
Mental Health Services
Parents Health (social science) education Social issues 03 medical and health sciences Grassroots 0302 clinical medicine 030225 pediatrics medicine Humans 0501 psychology and cognitive sciences Sociology Autistic Disorder Distributive justice Social Behavior Ethics Research ethics Medical education Social work Health Policy Communication 05 social sciences Grandparent medicine.disease Issues ethics and legal aspects Philosophy of medicine Practice Guidelines as Topic Autism Social psychology 050104 developmental & child psychology |
| Zdroj: | HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues. 29(2) |
| ISSN: | 1572-8498 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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