Tuesday 15 th Sept Philosophy Café The Ethics of Biotech: Who Decides on Stem Cell Research? Jamie Lewis LewisJT1@card

1. Tuesday 15th Sept Philosophy Café The Ethics of Biotech: Who Decides on Stem Cell Research? Jamie Lewis LewisJT1@cardiff.ac.uk Choon Key Chekar Chekar@cardiff.ac.uk

2. www.cesagen.lancs.ac.uk

3. Outline of Our Talk Jamie Lewis: • Stem Cells science operates in a culture of promise, finance and international competition. • The media play a prominent role in the trajectory of stem cell science. • The story of promise is one which sells stem cells to numerous audiences. Q&A Choon Key Chekar: • When/Why Does Public Opinion Matter for (Stem Cell) Science? • Our ‘Public’ Project: Questions and Key Findings • Some Emerging Issues to Talk about Discussion!

5. Stem cell science that sells • Scientific controversies • Shady side of science • The promise of technologies Are we interested in stem cells? Should we have say in stem cells? How much uncertainty is acceptable?

6. Stem cell science operates within an international economy of Tissue Finance Patients • Venture capital • International Competition

7. Uncertainty and Confusion? ‘If I asked who your regulators are, whowould you say?’ ‘I would say the Human Tissue Authority?’ ‘Do the MHRA get involved at all?’ ‘That’s a very good question and I think it is still an area of confusion…we haven’t had clear messages and it’s been quite difficult to find out who exactly is regulating you and what is expected’

9. What are Stem Cells? Stem Cells occur: • in foetuses • in adult tissue e.g. bone marrow There are: • IPS cells • Hybrid Embryos

10. “Many Catholics object to the idea of mixing human and animal DNA within the same entity and to the notion of creating what they regard as a life for the purposes of research – a life that will then be destroyed. Cardinal Keith O'Brien denounced the research as experiments of ‘Frankenstein proportion’.” (David Batty, the Guardian May 18th 2008)

11. Stem cell science that sells • Scientific controversies • Shady side of science • The promise of technologies • Hybrid Embryo Debate

15. Stem cell science operates within an international economy an economy of finance an economy of tissue an economy of patients PANORAMA On Stem Cell Tourism Feb 2008: 20 year old Michael Emms, from Ebbw Vale, travelled to Belize to have stem cells injected into his spinal cord to relieve Motor Neurone Disease. May 2009: 22 month old Joshua Clark, from Caernarfon, travelled to China for stem cell therapy to relieve blindness.

16. www.cesagen.lancs.ac.uk

17. Three statements to compare… • Bush, 2001: “The president does not make decisions by polls […]. This is a decision that was made based on what he believes is in the best interest of the American people and in the best interest of this nation”. • Obama, 2009: ‘The majority of Americans – from across the political spectrum, and of all backgrounds and beliefs – have come to a consensus that we should pursue this research.[…] That is a conclusion with which I agree. That is why I am signing this Executive Order…’ • Pattison, 2005, Key recommendation: ‘increased dialogue with the public over the next decade on stem cell research’ (Pattison, 2005).

18. When/Why Does Public Opinion Matter for (Stem Cell) Science? Science and technology have greater influence over our everyday life Increasing interest in ‘public engagement’ and ‘ethical, legal and social aspects’ of science and technology [‘failure’ of GM Nation] “… a concern at the ‘scientific ignorance’ of the populace, a consequent desire to create a better-informed’ citizenry, and enthusiasm for making science ‘more accessible’ (Irwin in Citizen Science, 1995) Or legitimising science research by paying for social scientists and humanity researchers – box-ticking routine? Public trust could justify more public funding and put pressure on politicians and the state to loose regulatory constraints in particular in stem cell science that requires long-term investment and access to some controversial research resources Contested ideas on the public’s role in science and technology studies still coexist: ‘enlightenment’ and ‘critical’ views of the relationship between science and the general public

19. Representations of ‘the Public’ in Media and Policy Discourse Questions raised… Who are ‘the public’? What role should ‘the public’ have? How do you identify ‘public attitudes’ and what does ‘dialogue’ mean? How is ‘public opinion’ represented? When is public opinion considered relevant? What rhetorical value does it have in policy making? A comparative analysis of how debates ‘the public’ and stem cell research have played our in four countries: the UK, New Zealand, South Korea and the USA. A systematic analysis of newspaper coverage – examining how the public was characterised and represented Participating in conferences/consultation events, examining policy documents and records of political debates and conducting some interviews with scientists and policy makers.

20. Overall Findings ‘The public’ most often had a voice in the debate in all four countries through stakeholders such as scientists, patient groups and religious organisations – rather than as ‘ordinary person’.  The public differently represented on the basis of certain religiousandnationalcharacteristics ‘The public’ as an entity, is much more often talked about, or ‘on behalf of’, rather than being represented directly. Public Opinion’ as a site of representational conflict

21. ‘Public Opinion’ as a site of representational conflict • Assessing public attitudes (via consultation or surveys) has sometimes become part of the battle, with different polls being commissioned by media outlets or funded by different sides (a practice most prominent in the US and in South Korea, but recently also appearing in the UK over the hybrid embryo debate) • The validity of survey findings can be challenged (because of the key role of the ‘framing effect’ in this area of research). • Similarly consultation exercises can be challenged (e.g. on grounds of process and representativeness) • The visible and direct ‘display’ of so-called ‘public opinion’ can also be susceptible to PR exercises (with ‘ordinary stakeholders such as ‘patients’ or ‘women’ mobilised for PR purposes) • The same public response may also, in one instance, be framed as appropriate, and in another instance be reframed as irrational

22. Some Emerging Issues… • Ideal of ‘pure public’ – uninterested and uninformed – challenged • ‘Informed’ decision?: “They accept there is no guarantee that the treatment will work but say they felt they had to seize the chance, however slight.” “I can assure you he will go back next year for more abuse. Disillusioned but, still very hopeful” • ‘Health activism’?: forms of patient and public activism associated with health, medicine and science • ‘How advocacy groups provide ways of understanding concepts such as identity, solidarity and personhood’ • ‘How they operate across different boundaries, blurring divisions between the state and social movements, experts and lay people, the market and civil society’ (Steve Epstein) • Why the mainstream media is positive to stem cell therapy? • Blindness in the light of stem cell therapy