Ethical Challenges in Participatory Research With Autistic Adults in Israel

Dan Weksler-Derri, Uri Shwed, Nadav Davidovitch

Research output: Contribution to journalArticlepeer-review

4 Scopus citations

Abstract

Contemporary calls for participatory research raise unique ethical questions. Our semi-participatory mixed-methodology study of the needs of autistic adults in Israel utilized an advisory committee of autistic persons. This article discusses three fundamental ethical issues that emerged in the study. First, employing formal diagnosis and legal guardian approval as inclusion criteria may result in the unjust exclusion of self-diagnosed autistics and those who are cognitively able to consent and participate. Second, adopting a participatory research approach does not in itself guarantee participatory justice; the representation of diverse groups from the community must be ensured. Finally, regarding autism spectrum disorder (ASD) as a medical diagnosis requires indisputable confidentiality which may conflict with the personal choice to waive anonymity and be recognized by name. Researchers and ethical committees should take these ethical challenges into account when conducting and reviewing studies with and about autistic adults.

Original languageEnglish
Pages (from-to)447-451
Number of pages5
JournalJournal of Empirical Research on Human Research Ethics
Volume14
Issue number5
DOIs
StatePublished - 1 Dec 2019

Keywords

  • adults with developmental disabilities
  • collaboration
  • health services research
  • informed consent
  • justice/participant selection/inclusion/recruitment
  • privacy/confidentiality
  • public health research
  • qualitative methods

ASJC Scopus subject areas

  • Social Psychology
  • Education
  • Communication

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