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(Re)conceptualising Vulnerability Beyond Deficit Definitions
 

Paper 1: Tertiary students’ views of vulnerability as research participants in the Scholarship of Teaching and Learning.

Speaker(s): Amanda B Lees, Simon Walters, Rosemary Godbold

Keywords:  Ethics review, Scholarship of Teaching and Learning, student participant, vulnerability
Abstract: Ethics review bodies have their genesis with medical research, where they continue to play a key role in protecting vulnerable participants. With an expansion of the scope of ethics review to now assess research representing broad-ranging disciplines, methodologies and paradigms, there are calls for increased critical analysis. An under-researched area is the role of ethics review for research within the Scholarship of Teaching and Learning, where significant variation in ethics review exists internationally (Lees et al., 2020). Not all institutions require formal review for teaching and learning research and requirements differ when ethics review is stipulated. Variation supports the notion that what counts as ethical conduct in teaching and learning research is subjective, including terms such as vulnerability. Participant views on ethical conduct in research are seldom canvassed, with factors such as vulnerability determined by members of ethics review bodies. There are indications that students taking part in teaching and learning research may not necessarily see themselves as vulnerable (Sarpel et al., 2013). This presentation addresses both the call for further research on participant views and increasing critical analysis of ethics review, by providing insights on participant vulnerability from tertiary students enrolled in a health faculty at a New Zealand university

 

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Paper 2: Learning about ethics from music and dementia

Speaker(s): Ursula Crickmay

Keywords: Music, dementia, ethics, posthumanism

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Abstract: 

In this presentation I will describe how taking a posthuman approach to my PhD research has raised questions for me about the formal ethical processes involved in research, particularly as I have encountered them whilst attempting to work with people living with dementia. In my study I am exploring a posthuman understanding of ‘co-becoming’ in creative music workshop practices.  Following Braidotti (2018), the human subjects (including myself) who are co-becoming with my research are acknowledged as ‘embodied and embedded’ (p. 1).  Body and mind are not seen as separate; objects, spaces and environments are seen not as contexts for bodies, but as emergent, enmeshed co-participants.  Sound emerges, co-becoming collectively with and within the workshop assemblage which has so far included (but not been limited to) instruments, toys, voices, bodies, Zoom, microphones, carpets, playgrounds, arts organisations, songs, smells, iPads, recordings. The ethical questions that have arisen for me particularly concern agency and contribution.  From a posthuman perspective, agency is no longer restricted to human minds, but rather distributed across human and non-human materialities (Coleman and Osgood, 2019).  This is vividly demonstrated in a music workshop.  Whilst musicking together, the agency of people living with dementia is enacted in relation, emergent in creative intra-actions involving bodies, sounds, and many other materialities.  By contrast, the ability for people living with dementia to give consent to take part in research is understood as an individualised, cognitive matter concerning bounded individuals.  By this measure, many people with dementia are deemed unable to give consent to take part in research: their agency is not acknowledged.  Further to this, once someone else is needed to give consent, the Mental Health Act 2005 must be consulted (HRA, 2021).  This adds the requirement for the research to address the ‘impairing condition’ of those deemed unable to give consent themselves.  I argue that this reduces a person with dementia to a set of impairments.  It resonates with Tom Kitwood’s (1997) seminal work on dementia and personhood in which he points to how people living with dementia may be considered less than human, defined not by their uniqueness, but by their pathologies and incapacities.  I will argue that the formal ethical processes I have encountered in my research diminish the agency of people living with dementia, and that there are ethical consequences for the processes of knowledge production from which they may be unintentionally excluded.