Background:
Sub-project 1: The UK Stem Cell Bank: An Institutional Ecology Sub-project 2: Comparative Analyses of ‘Public Discourse’ and ‘Discourses About The Public’ In Relation To Stem Cell Research Sub-project 3: From Bench to Brain: The processes of developing neurological stem-cell therapies Dissemination and Impact Outputs
Objectives In 2003 the United Kingdom established the world’s first Stem Cell Bank to hold human embryonic stem cell lines from around the world, and to make them available to researchers globally. Human embryonic stem cells (hESC) lines are controversial and our project sought to understand how, as a new type of institution, the UK Stem Cell Bank developed procedures covering the technical, ethical and legal issues. We compared the UK to the Bank in Spain to understand the challenges they faced.
Methods The project conducted interviews with staff at both banks and observations at the UK Bank and among the UK stem cell science community and conferences and workshops.
Results There is great ambiguity in UK stem cell science about the technical specifications for producing hESC lines that can be transplanted into people. Termed ‘clinical grade’ lines these imply incredibly high standards of laboratory cleanliness and lengthy documentation detailing the techniques and biological materials used. Writing suitable regulations for using hESC lines is difficult before the outcome of the research is known, but, at the same time, it is illegal to conduct the research until the regulations are in place. We call this circularity ‘Regulatory Regress’.
The Spanish and UK banks have different ways of presenting themselves to the publics within their countries. The UK bank presents itself as a safe and reliable low key institution working on the ethical distribution highlight its independence and steadyness. Contrastingly the Spanish Bank emphasises its cutting edge research to show it is internationally important and high profile. Because of this the two Banks have different organisational structures and media relations.
The Bank makes decisions about which donations of stem cell lines to accept and who to distribute to; so must establish if researchers in countries across the globe understand and apply the Banks ethical standards correctly. This is done by looking for trusted organisations within a country and exploring whether the laboratory has links to it.
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Objectives We wanted to understand how the idea of ‘the public’ is talked about within media and policy discussions about stem cells. We compared the UK, USA, South Korea and New Zealand. We looked at hESC in general, but also focused upon a case study of the huge steps forward in hESC science made by Prof. Hwang from South Korea, and the realisation six months later that his work had been fabricated.
Methods We analysed newspaper reporting and policy documents from all four countries and conducted interviews and conference observations in the UK, New Zealand and South Korea.
Results ‘The public’ voice was present in all four countries but primarily spoken through stakeholders i.e. scientists, patient groups and religious organisations rather than ‘ordinary people’. They were more often talked about rather than represented directly.
National characteristics were key to framing ‘the public’. In the US people were framed as ‘voters’ & ‘tax payers’ reflecting the local political culture. In the UK ‘the public’ are more likely to be framed as the ‘lay public’, with an emphasis on expert/non-expert divisions. New Zealand and American media referred to a pioneer legacy of ‘New World’ citizens eager to explore new scientific territories. Ideas about national characteristics were particularly prevalent in discussions of the South Korean public, both in their national press and in international coverage about South Korea. ‘The public’ were framed as predisposed to hard work and innovation during Hwang’s breakthroughs but were reframed during the scandal as celebrity-worshiping nationalists.
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Objectives This project conducted an in-depth analysis of a stem cell laboratory working on Parkinson’s disease. We studied their work for a year to understand the challenges they faced, how they addressed them functioning as a multi-disciplinary team, and how they formed conclusions about human health from conducting work with rodents.
Methods
Results
The type of translational research conducted at the laboratory requires an interdisciplinary research network including cell biologists, neurosurgeons, computer programmers and patient groups. These groups are motivated to come together by the promise and imagined potential outcomes of stem cell research.
While orientated towards human health most stem cell work is conducted in ‘animal models’; in this case rodents produced with brain deficiencies similar to those seen in human Parkinson’s disease sufferers. Deciding the extent to which an animal model accurately reflects the human condition is complicated as work with rodents is intended to help us understand what the condition is actually like in humans.
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We organised a three part end of award event presenting at major policy events at the Wellcome Collection in London and the National Assembly of Wales and a public event at Cardiff’s Philosophy Café.
Outputs
CBAR Outputs
CBAR Research briefing - key findings
Subproject 2: summary report Summary Report of Public Opinion/Engagement Literature
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