When Good Intentions Backfire: University Research Ethics Review and the Intimate Lives of People Labeled with Intellectual Disabilities

Alan Santinele Martino, Ann Fudge Schormans

Abstract


We critically discuss how practices of ethical governance through university research ethics committees can contribute to the silencing of people labeled with intellectual disabilities through the reproduction of discourses of vulnerability and protectionism. In addition, disabling assumptions of (in)ability and reductive bio-medical understandings of labeled people as a homogeneous group can create concern that such research is "too risky," and perhaps not valuable enough to outweigh potential risks. Combined, these practices deem people "too vulnerable" or "too naïve," and thus, unable to make decisions for themselves about participating in research without putting themselves and the researcher(s) at risk. In this article, we draw on insights gained from our experiences undergoing ethics review for projects focused on the personal and intimate lives of people with intellectual disabilities. We proffer that such ethical governance, though well-intentioned (i.e., to protect participants and researchers), limits not only possibilities for research that would otherwise prioritize the perspectives and agency of people with intellectual disabilities but also how researchers are "allowed" to engage with them in research.


Keywords


intellectual disability; disablism; qualitative research; ethics; ethics review; research regulation; vulnerability; intersectionality; student research

Full Text:

HTML PDF


DOI: http://dx.doi.org/10.17169/fqs-19.3.3090

Copyright (c) 2018 Alan Santinele Martino, Ann Fudge Schormans

Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.