In Pursuit of Ethical and Inclusive Research: What Ethics Committees and Disability Researchers Can Learn From Each Other

• Published in: International journal of qualitative methods 2024-02, Vol.23
• Main Authors: Walsh, Megan, Stead, Victoria, Sawyer, Susan M., O’Shea, Amie, Watson, Joanne M., Anderson, Kate L. M.
• Format: Article
• Language: English
• Subjects: Augmentative and alternative communication; Case studies; Cerebral palsy; Collaboration; Committees; Communication; Community; Community research; Epistemology; Ethics; Ethics committees; Marginality; Multidisciplinary teams; Participatory research; Qualitative research; Reflexivity; Research ethics; Researchers; Sexuality; Speech; Youth
• ISSN: 1609-4069; 1609-4069
• DOI: 10.1177/16094069241237549

Across disciplines, qualitative researchers have documented epistemological and practical tensions in the ethical review of community-based and participatory research, with many arguing that ethics committees’ decisions perpetuate the exclusion of marginalised communities from research engagement. In the existing literature, the research team and the ethics committee are often characterised as staunch opponents. Conversely, in our recent qualitative research addressing communication about sexuality with young people with cerebral palsy who use communication methods other than speech (augmentative and alternative communication), we found that constructive collaboration between researchers and committee members yielded novel insights. Co-authored by a multi-disciplinary research team and the former chair of a Human Research Ethics Committee, this reflexive case study identified three key tensions which arose in the ethical review of research involving this purportedly marginalised population, which reflected the wider importance of trust. We propose a series of practical recommendations to support productive collaboration in the pursuit of safe, inclusive and community-driven research. Plain language summary Introduction In Australia, researchers follow rules and policies to make sure their research is safe, fair, and correct. Before a research project starts, a group of experts called an ethics committee checks the researchers’ plan, to make sure it is safe. Sometimes, ethics committees are worried that people with a disability could be hurt or upset by a research project. To protect people with a disability, ethics committees may say: • that the research activities need to change, or • that children with disability or people with intellectual disability can’t participate in the research, or • that other people (e.g., a parent or guardian) should always give their permission for the person with a disability to participate. Sometimes these changes are sensible and safe. But sometimes they make research unfair or hard to access for people with a disability. This is frustrating when a research plan has been designed by people with a disability, or by people who know them well. What We Did We did research with young people who have cerebral palsy who use methods other than speech to communicate (like gestures, communication books, or communication devices). Our research was about private topics like relationships and sex. When we applied to do our research, the