A/Prof. Claire Hooker1, Dr Siun Gallagher1, Prof. Ian Kerridge2, Prof. Wendy Lipworth3
1Sydney Health Ethics, University Of Sydney, University of Sydney, Australia, 2Royal North Shore Hospital, St Leonards , Australia, 3Ethics and Agency Research Centre, Dept of Philosophy, Macquarie University, Macquarie Park, Australia
Biography:
Dr Claire Hooker is Associate Professor in Health and Medical Humanities at Sydney Health Ethics and President of the Arts Health Network NSW/ACT. Claire undertakes research and advocacy in two areas – risk communication, particularly in relation to infectious disease, and the creative arts and health. Her approach centres a practice of listening to and honouring the perspectives and expertises of different knowledge holders and knowledge users. Her current research focuses particularly on the role and impact of arts and culture in disaster management, in critical epistemology for arts and health, and in values and ethics in arts and health and in risk communication. Claire has published 4 books and 65 peer-reviewed journal articles and book chapters on topics as diverse as non representational theories of empathy and infection control, critiques of cultural norms in the medical humanities, the use of video-reflexive ethnography to improve hospital practice, and the history of radio astronomy.
Abstract:
Aims:
For decades, stem cells have held out the promise of transformative regenerative treatments. But globally, many stem cell-based interventions (SCBIs) exist for which evidence of effectiveness is (as yet) absent or is contested, or for which key clinical questions, such as appropriate conditioning regimens or outcomes metrics, remain unanswered.
It is difficult for both patients and clinicians to appraise risks, potential benefits or the status of evidence because these are entangled with emotional, political, commercial, academic, and other interests, in which all actors are forced to rely on the expertises of other actors to appraise evidence and make decisions.
We apply a recent framework of expertise dilemmas to better understand stem cell controversies and investigate how mitigations might be ‘designed in’ to support resolution.
Methods:
This presentation maps the different expertises involved in making decisions about accessing stem cell therapies across three different domains of potential SCBIs: multiple sclerosis; cerebral palsy and osteoarthritis, and analyses the dilemmas about epistemic uncertainty that result.
Results:
We identify the different expertises held by clinician scientists, specialists from clinical disciplines, legal regulators and patients and identify where these produce epistemic limitations and differences in epistemic values. We then consider the possibilities of designing-in trust increasing features in the terms of the framework: assessibility, reliability, formative participation, regulatory system modification, and current and desired soft problem solving processes.
Conclusions:
We set out some features of an ecology of trust for SCBIs in Australia, set in relation to resource issues.