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

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. IntroductionIn 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:center dot that the research activities need to change, or center dot that children with disability or people with intellectual disability can't participate in the research, or center dot 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.IntroductionIn 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:center dot that the research activities need to change, or center dot that children with disability or people with intellectual disability can't participate in the research, or center dot 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 DidWe 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 ethics committee had lots of concerns. They asked us to change a lot of things. They even asked us to change some of the things that people with disability told us they wanted or needed. It was a long and frustrating process. We talked with the leader of the ethics committee and decided to write this article together. We wanted to help other researchers, ethics committees, and people with disabilities to work better together.What We FoundIt is important that people with a disability be included in research that is fair and safe. Ethics committees have a big responsibility to keep people safe, but the experts who work on an ethics committee may not know a lot about disability. Stories and videos of people with disabilities participating in research can help the ethics committee to understand what is possible. Ethics committees can also talk to people with a disability, to learn more about their research needs and experiences. All research participants with a disability are unique. Every person will have different risks and different needs. Some people will have more than one accessibility need. For example, a young person with physical disability like cerebral palsy may also have difficulty reading and may not use speech to communicate. When ethics paperwork asks about each need separately, it can be hard to explain how a person with a lot of access needs will be supported. When research participants have complex needs, ethics committees can feel confused and worried. If this happens, they should have a conversation with the researchers about it, instead of saying "no" to the research. Sometimes researchers want to use special or creative research methods to involve people with disabilities. These need to be explained clearly, so the ethics committee can trust that they are safe. Researchers and ethics committees can also use research rules and resources that are created for, and by, people with a disability. These are written by large organisations like the International Association for the Scientific Study of Intellectual and Developmental Disabilities (https://iassidd.org/). By following these steps, we think that research can be safer and more inclusive for everyone.ContactIf you want more information about this article, you can email Megan Walsh at mcwalsh@deakin.edu.au.