ERIC Number: EJ1269557
Record Type: Journal
Publication Date: 2020-Oct
Pages: 15
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1362-3613
EISSN: N/A
Person-Oriented Ethics for Autism Research: Creating Best Practices through Engagement with Autism and Autistic Communities
Cascio, M. Ariel; Weiss, Jonathan A.; Racine, Eric
Autism: The International Journal of Research and Practice, v24 n7 p1676-1690 Oct 2020
Research ethics is an important part of any study. Ethics goes beyond ethics committee approval and consent documents. It addresses broader issues of respect, inclusion, and empowerment in the everyday context of research. This article focuses on everyday aspects of research ethics for studies involving autistic participants. It draws on a review of the literature and a process of ethical deliberation involving a task force of researchers, professionals, autistic self-advocates, and parents. These methods led to the creation of suggestions for researchers. This article describes the community engagement process, briefly presents the task force suggestions, and provides more detailed discussion of select items for illustration. Suggestions are organized around five "person-oriented research ethics" guideposts: (1) individualization (e.g. providing individualized support for participants), (2) acknowledgment of lived world (e.g. acknowledging barriers to care that impact research ethics), (3) empowerment in decision-making (e.g. creating accessible consent processes that address specific communication needs), (4) respect for holistic personhood (e.g. addressing sensory and processing needs and strengths), and (5) focus on researcher-participant relationships (e.g. involving autistic people in ways other than research participants, including but not limited to via participatory research). This project highlights the value of researcher-community partnerships in discussions about research ethics. [The Autism Research Ethics Task Force contributed to the writing of this article.]
Descriptors: Ethics, Research Methodology, Researchers, Autism, Pervasive Developmental Disorders, Individual Needs, Communication Disorders, Empowerment, Participative Decision Making, Holistic Approach, Interpersonal Relationship, Participatory Research, Informed Consent
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Publication Type: Journal Articles; Reports - Research; Information Analyses
Education Level: N/A
Audience: Researchers
Language: English
Sponsor: N/A
Authoring Institution: N/A
Grant or Contract Numbers: N/A