Paternalism gone ridiculous? Encounters with risk-averse ethics committees in doing participatory research with children with and without disabilities

Dr Lisa Stafford 

Queensland University of Technology, Brisbane, QLD


Ethics is a critical frame guiding researchers to ensure participants are researched appropriately and respectfully. Researchers advocating for participant-led or co research with marginalised groups know too well the significance of ethical considerations to ensure research is in the best interest of participants not researchers. My research approach is no different. For over the past decade, I have been researching children’s participation and disabled childhood geographies. My approach is underpinned by core ethical values and participatory-child-and-ability-friendly principles and processes. However, as my research is often at the intersection of children and disability, I address two specific groups within the NHMRC chapter 4 – children and cognitive impairment. Being at this intersection, I constantly undergo committee level review which is important. However, in more recent times I have noted growing interrogation – where questions are less about the ethics of the approach and more about risk aversion. This presentation presents two cases of recent committee level review to raise discussion on the growing occurrence of paternalism underpinned by Ableism and Adultism thinking, and the need to advocate for change so specific groups are not marginalised in these processes or even excluded from research because of the current culture of ethics committees.

Dr Lisa Stafford, is an Lecturer in School of PHSW and a 2019 ARC DECRA Fellow. Her research is in inclusive communities, disabled childhood geographies, and participatory process to hear the most maginalised ‘voices’ in community and research practices

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