Ethical Challenges in Participatory Research With Autistic Adults in Israel
| Autor: | Uri Shwed, Dan Weksler-Derri, Nadav Davidovitch |
|---|---|
| Rok vydání: | 2019 |
| Předmět: |
Adult
Community-Based Participatory Research Social Psychology Autism Spectrum Disorder Participatory action research 0603 philosophy ethics and religion Education Ethics Research 03 medical and health sciences 0302 clinical medicine Informed consent Social Justice Legal guardian medicine Humans Confidentiality Mental Competency 030212 general & internal medicine Participatory justice Bioethical Issues Autistic Disorder Israel Informed Consent Communication 06 humanities and the arts medicine.disease Autism spectrum disorder Engineering ethics 060301 applied ethics Psychology Inclusion (education) Qualitative research |
| Zdroj: | Journal of empirical research on human research ethics : JERHRE. 14(5) |
| ISSN: | 1556-2654 |
| Popis: | 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. |
| Databáze: | OpenAIRE |
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