Feb 2016: Lunchtime Series – Regulating Narratives around New and Emerging Technologies (S97)

FRI, FEB 19 AT 11:00 AM, CARDIFF

Reg Narr

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About the workshop

This crossdisciplinary workshop explores ‘regulatory narratives’ around new and emerging technologies. Led by four theme leaders, Becky Dimond, Elen Stokes, Stijn Smismans and Bernadette Richards, the workshop centralises three distinctive contexts – nanotechnology, mitochondrial donation and the Access to Medical Treatments (Innovation) Bill (also known as ‘the Saatchi Bill) in considering the construction, translation and framing of risks and benefits in the regulatory sphere.

Professor Bernadette Richards (University of Adelaide/Cardiff University Honorary Visting Fellow)

In the advanced technological world of today we rail against tragedy and struggle to accept our collective mortality, it appears inconceivable that illness and injury cannot be simply remedied by the latest medical advancement.  This inability to accept that some conditions are, as yet, untreatable results in a collective ‘therapeutic misconception’ that new and emerging technologies will be able to combat previously terminal conditions, and that all treatment is good treatment.  My work is considering the legal and social response to this ‘misconception’ and the laws that are a result of this view. In the UK there is the ‘Saatchi Bill’, and in the United States the ‘right to try’ laws.  I am considering whether this avoidance of the established clinical research framework represents an appropriate response.  A central question I am asking is whether  this an area where, in the absence of any clear evidence that the emerging treatments are at least safe for the patients (let alone potentially curative) that clear boundaries should be set around individual autonomy.

Biography: Bernadette is an Associate Prof at the University of Adelaide with a research focus on the nexus between law and ethics. Current projects include challenging the accepted model of autonomy, considerations around the legal framework of advance care directives specifically in the context of vulnerable populations and regulatory and ethical considerations in the context of organ donation. 

Dr Rebecca Dimond (School of Social Sciences, Cardiff University)

In October 2015 regulations were put into place to allow the UK clinical licencing of novel and controversial IVF techniques known as mitochondrial donation, marking a significant moment as the UK became the first country to legalise modification of the human germline. The debates revealed emotive and political campaigning strategies to influence the vote. Supporters were able to draw on powerful patient stories and evoke a sense of hope and urgency: that these IVF  techniques offer a treatment and cure, will stop suffering, will eradicate disease from families and from society, and that patients need and want them now. In contrast, those who did not support the techniques were criticised for drawing on a discourse of fear – that this would be a slippery slope to designer babies – and for using delaying tactics. The UK has now moved on and gene editing dominates the headlines, and I am interested to see how arguments are made about the significance of genetic material and the distinction between research and clinical application, and what kinds of evidence are used to persuade.

Biography: Rebecca is a social scientist, interested in the social aspects of rare and genetic disease. She is currently funded by the ESRC Future Research Leaders programme to explore the development (and recent legalisation) of mitochondria donation. Recent publications include:

Dimond, R. 2015. Techniques of donation: ‘three parents’, anonymity and disclosureJournal of Medical Law and Ethics 3, article number: 197370/1001250080.

Dimond, R., Bartlett, A. and Lewis, J. T. 2015. What binds biosociality? The collective effervescence of the parent conferenceSocial Science & Medicine 126, pp. 1-8. (10.1016/j.socscimed.2014.12.005)

Dr Elen Stokes and Professor Stijn Smismans (School of Law and Politics, Cardiff University)

We explore the idea of ‘evidence-based policymaking’ in a context where relevant scientific evidence is weak, contradictory or uncertain.  Advances in nanotechnologies promise to revolutionise many aspects of modern life, however there remains considerable uncertainty over the risks, benefits and social consequences of particular applications of engineered nanomaterials.  We chart the various types of evidence gathered and relied upon in EU policymaking on nanotechnologies, and ask what counts as ‘evidence’ and how that evidence is translated into public policy.

Biographies:

Elen is a Reader in Law at the School of Law and Politics, Cardiff University. Her research expertise is in environmental law and the regulation of risk, particularly in respect of new technologies.  Her current work focuses on regulatory responses to new commercial applications of converging technologies (e.g. nanotechnology, synthetic biology), and technological advances in the extraction of unconventional oil and gas (e.g. hydraulic fracturing or ‘fracking’).

Stijn is a Professor of Law, holder of the Jean Monnet Chair in European Law and Governance, and Director of the Cardiff Centre for European Law and Governance, a Jean Monnet Centre of Excellence. His research on European governance builds bridges between different disciplines, from law and political science, to sociology and industrial relations. He has provided policy advice to the European Commission, the European Parliament, the European Economic and Social Committee, the Committee of the Regions, and the Welsh National Assembly.  He has held research projects funded by the European Commission, the European Research Council, the European Foundation for Living and Working Conditions, and the Italian Ministry for University Education and Research. His current research focuses in particular on the regulation of different types of expertise in European policy-making.

WHEN: Friday, February 19, 2016 from 11:00 AM to 1:00 PM (GMT) – Add to Calendar

WHERE: Room 0.01 – Law School Building. Cardiff University. Cardiff CF10 3AX GB – View Map