4.3 Article

Empowerment in decision-making for autistic people in research

期刊

DISABILITY & SOCIETY
卷 36, 期 1, 页码 100-144

出版社

ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD
DOI: 10.1080/09687599.2020.1712189

关键词

Research ethics; empowerment; autism; informed consent

资金

  1. Kids Brain Health Network NeuroEthics and Societal Innovation Core award
  2. Social Science and Humanities Research Council of Canada's Banting Postdoctoral Fellowship
  3. Angelo-Pizzagalli Institut de recherches cliniques de Montreal Foundation Fellowship
  4. Fonds de recherche du Quebec - Sante Career Award

向作者/读者索取更多资源

This article discusses the importance of empowerment in research within autism communities, emphasizing the need for individuals with autism to have a say in research decisions. It explores the idea that research ethics can serve as a tool for empowering research participants to shape the research process and context. The article aligns with advocacy communities' goals of inclusion for autistic and disabled individuals.
Empowerment in research is important in many autism and autistic communities and an important part of 'nothing about us without us'. It is also an important component of person-oriented research ethics. This article reviews the literature on ethics in autism research for information related to decision-making empowerment for autistic people. A review of 81 articles reveals several themes and specific strategies. Empowerment is important for, but also goes beyond, establishing informed consent. Empowerment is a form of participant and community engagement, and necessarily shaped by specific context. The view of research ethics put forth in this article envisions ethics as a potential avenue for empowerment, where research participants are able to decide how to be involved and to shape research processes and contexts. This view of research ethics is aligned with the aspirations of many in advocacy communities, though it may not correspond to conventional understandings of research ethics.Points of interest This article talks about ethics in autism research. It focuses on the importance of people with autism having the power to make choices about research. It describes what published articles have said about this issue. Making choices about research includes not only the choice to take part in a study or not, but also many other choices before, during, and after the study. The way that this article talks about research ethics helps achieve goals of many autistic people and disabled people to be included.

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