Prof Rachel Ankeny1, Prof Joan Leach2, Distinguished Emeritus Professor Dianne Nicol3
1School of Humanities, University Of Adelaide, 2Australian National Centre for the Public Awareness of Science, Australian National University, 3Faculty of Law, University of Tasmania
Practices associated with stem cell research and therapeutics in Australia are at a crossroads: there is increasing urgency for crafting replicable, open, and trustworthy science and fostering responsible innovation practices in the stem cell domain. This will require researchers and clinicians to be aware of the need to be accountable and actively engage with stakeholders. However, many issues in the field are hotly contested, with considerable conflict amongst researchers and practitioners, leaving regulators, funders, publics, and other stakeholders frustrated and unclear about how to find accurate and reliable information, and how to contribute to shaping the future of this field for the benefit of all Australians. We have an opportunity to provide robust guidance based on stakeholder identification of the main factors that must be addressed to build trust in and to support potential acceptance and uptake of stem cell research and therapies, and how to establish equitable distribution methods for publicly funded stem cell lines and processes for setting priorities. In this paper, we introduce a model for transparency and trust in medical research/therapeutics known as a ‘commons.’ We discuss our ongoing project to use interdisciplinary methods including conceptual and empirical research to explore the shared values, goals, and priorities of diverse stakeholders (including researchers and other experts, industry, patients, regulators, and publics) that might be supported with a commons-type model (which has been used for medical information, particularly for genomics, but not in this type of domain) and assess the prospects for such a model in the Australian context.
Biography:
Rachel A. Ankeny is Professor of History and Philosophy at the University of Adelaide, and team leader of the NHMRC MRFF project “Enabling Openness in Australian Stem Cell Research.” Joan Leach is the Director of the Australian National Centre for Public Engagement with Science at ANU, and a scholar in rhetoric and communication particularly in contentious areas of science. Di Nicol is a legal scholar known for her empirical research with law and policy reform in areas of new and emergent technology. All three of the presenters do cross-disciplinary research, and together bring expertise in bioethics, law, biomedicine, social studies of science, and public understanding of science.