EGN Conference 2013 - ESRC Genomics Network: As one phase ends, another begins…

by Chris Berry, Genomics Forum Press and Communications Officer

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The final session of the 2013 EGN conference was appropriately dedicated to examining how engagement between the social and life sciences would continue beyond the Genomics Network.

In his introduction, the session chair – Graeme Nicol, Former ESRC Research Committee Member and Impact Champion – indicated how appropriate it had been that the conference had focused on the “return on ESRC’s investment” the Network had achieved during the last decade, demonstrating exactly how substantial this had been. With that investment now nearing its end, the closing session of the conference would allow the Directors of the four Network Centres to not only to look back on their work, but to also to highlight the future plans and trajectories for these.

The Genomics Forum was first to contribute, with former Deputy Director, Dr Steve Sturdy, speaking in place of Forum Director, Professor Steve Yearley, who unfortunately was unable to attend the conference due to illness.

Steve commended the ESRC for, 10 years ago, having the vision to identify the important transformations that developments in the life sciences were beginning to have upon society. The ESRC responded accordingly by funding the three research Centres and the Genomics Forum to investigate and engage with these societal impacts, under the umbrella of the Genomics Network.

Elaborating on the work of the Genomics Forum, Dr Sturdy indicated that the ESRC was visionary in establishing this not to undertake research, but to provide an interface between the issues being researched by the other three Centres and key stakeholder audiences, including scientists, policymakers and the public.

Steve concluded by indicating that even though there would no longer be a role for the Genomics Forum beyond the end of the Genomics Network, an element of “Forum-ness” has been inculcated into the remaining Centres and more widely, and this would act as a fitting legacy to the Forum’s work and impact.

Professor David Castle spoke about the future direction of Innogen. He indicated that the partnership between the University of Edinburgh and the Open University would endure, and this had been cemented by the establishment of a memorandum of understanding. The Centre was undertaking a process of rebranding; reflect its ongoing movement away from its original focus on “genomics” to a more general interest in socioeconomic influences resulting from the life sciences and technical innovation.

David further indicated that the repositioning of Innogen to become the Innogen Institute would be phased, with the new Centre increasing its activity on the run up to the final cessation EGN-related research in March 2014. The work of the new Innogen Institute would build upon that of the old Centre, which had recognised publications in almost all areas of “the Web of Science”, and the Institute’s work would be supported by an ever increasing number of UK and international funders.

Professor Castle also noted that as well as undertaking research, the new Institute would focus upon providing tailor-made training, such as the new MSc in Management of Bio-economy Innovation and Governance.

Setting out the future direction of Cesagen, Professor Ruth Chadwick indicated that the formal collaboration between the Universities of Lancaster and Cardiff would cease in June 2013. However, a number of pre-existing links and collaborations will continue, resulting in tangible outputs such as the journal New Genetics and Society.

Cesagen will continue as a Cardiff-based centre for social science research, but it would transform itself to become the Centre for Ethical and Social Aspects of Genomics and Epigenetics (CESAGENE). Ruth stated that research activity would be located at the Cardiff School of Social Sciences, but would also feature internal collaborations with other schools at Cardiff University. Cesagene’s research would focus on key themes that include: personalised medicine; epigenetics; ageing; and food.

Egenis Director, Professor John Dupré, started by identifying that his Centre had a different background to the others within the Network, resulting in some distinctive features in the work Egenis undertakes. Specifically, Egenis has brought together the fields of sociology, STS, the philosophy of science, and (increasingly) anthropology, which do not necessarily naturally complement each other. Its work has been wide-ranging during the last decade, covering subjects as diverse as polygenic disease, the “philosophy” of stem cells, and “big data”.

John set out that his Centre will also continue beyond the end of the Network, with Egenis being the title that represents the Exeter Centre for the Study of the Life Sciences. The Centre would continue to focus on research into areas such as: genetics and identity; health technology and its impact on society (and in particular, the role of diagnosis); autism, dyslexia and ADHD; and the role of data within research.

Professor Dupré will continue as Director of Egenis. In addition to this role, he will lead a project relating to the ontology of contemporary biology.

With the Centre Directors having set out their visions of the future for their respective institutions, the ESRC Chief Executive – Professor Paul Boyle – concluded the conference. He stated that the ESRC had made a very wise choice when it agreed to fund the Genomics Network a decade ago. The Network exemplifies the historic and future requirement for research into the societal impact of developments in the life sciences, and it will still be a number of years until it is known exactly how successful the ESRC’s investment has been. In many ways, “This is not the end…” Professor Boyle stated. Although the ESRC may not now fund the Network directly, it will remain very supportive of the sort of social science research Network Centres have, and will continue, to undertake.

EGN Conference 2013 – Plenary Five: The EGN Impact Agenda

by Claire Packman, Egenis Communications Officer

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Catherine Lyall (Genomics Forum), chairing, opened the session by remarking that “The research conducted by the EGB has had an impact way beyond academia.” We couldn’t, she said, demonstrate the full scope if its global reach in one short session – but the speakers had a jolly good go.

Joyce Tait (Innogen), herself no slouch when it comes to speaking truth to power, or to policymakers, at any rate, introduced Michael Oborne, formerly of the OECD. In 2006, Innogen was contracted by the OECD to develop scenarios of healthcare in 2030, a project which, Professor Tait said, was “quite formative” for the centre. The scenario report, Health Biotechnology to 2030, considered the pathways that health biotechnologies could follow, the future trajectory of the bioeconomy primarily in the context of human health, and the likely societal, economic and policy impacts of these projected outcomes, positing two potential scenarios . Outlining some of the report’s key points, Dr Oborne said one scenario in particular underscored the necessity of changing regulatory systems to control conditions under which innovation can take place – regulators are the gatekeepers to innovation.

Christine Knight (Forum) spoke about a joint project between the Forum and the Human Genetics Commission (HGC) in 2008, a ‘Citizens’ Enquiry into the forensic uses of DNA and the National DNA Database’. The report identified 10 topics of particular concern, which were subsequently used by the HGC as the basis of a public consultation. Sarah Cunningham-Burley, at the time a member of the HGC, made a video contribution (the film was made by the Forum’s very own filmmaker-in-residence, Cameron Duguid – isn’t it handy to have a filmmaker in the house? You never know when you might need one), praising’s the Forum’s expertise, particularly its efforts to engage groups generally regarded as ‘hard to reach’.

Cesagen’s contribution was a reflection on the interface between academia and Parliament, focusing particularly on the benefits of policy placements. Sarah Bunn of the Parliamentary Office of Science and Technology (POST), gave an overview of the work of POST, mentioning particularly POST fellowships, which give postgraduate or early career researchers the opportunity to work with POST on a specific briefing or project. She also said the POST is to recruit two social scientists, which has to be seen as something of a surge of recognition for the field. Richard Watermeyer (Cesagen), talked about his own experience of a short POST placement, part of his impact and engagement research. “I can’t tell you what an eye-opener it has been,” he said, although he did a pretty good job of telling us. Richard is soon to take up a two-year secondment in the office of the Chief Scientist for Wales, the first time a social scientist has been offered such an opportunity. Keep this up, Richard, and when Wales realises it needs a Chief Social Scientist you’ll have to be in the frame.

As if the excitement of having representatives from the OECD, the Human Genetics Commission and form Parliament at an EGN conference weren’t enough, the session finished with a media celebrity. John Dupré (Egenis) discussed the role the media can play in communicating social science with Today Programme presenter Evan Davis. Luckily for John, Evan displayed none of the rottweiler interviewing technique for which that programme is famous. He focused first on ‘metaphorical mythbusting’, citing John’s work on deconstructing the ‘tree of life metaphor, and the notion of the genome as ‘blueprint for life’. “Understandings of science do congeal around these metaphors,” said John. “To advance understanding and improve discussion, we need to get rid of them.” Following more discussion about metaphors and their use and abuse, Evan returned to John’s work on evolution, remarking that it had upset some by appearing to give comfort to creationists. John described the reaction of some scientists to the debate as ‘circling the wagons’: “The shocking thing is if science becomes as dogmatic (as creationism), because then the opponents have won.”

The upshot of this session, however, has to be: Round five to the EGN, and a victory on points.

EGN Conference 2013 – Parallel Two: Governance of New Technologies

by Elisabeth Barlow, Innogen Communications and Policy Officer

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For new technologies, policy makers are facing demands to devise and adapt regulatory systems before there is evidence on the nature of future products and processes, potential markets, or the benefits and risks to different stakeholders. They are facing a major challenge in meeting these demands without unnecessarily inhibiting innovation. This session brought together some of the leading voices in this area to discuss methods for improving the success rate of delivering life science products and processes that are both societally useful and commercially viable.

Based on a perspective from patients and families with rare diseases, Alastair Kent (Genetic Alliance UK) kicked off the session with a clear account of what a new regulatory framework could look like. Traditional regulatory decisions have been based on the licensing of small molecules for the benefit of large populations, ultimately delivering blockbuster drugs to millions while not being overly beneficial to patients and families with rare diseases.

Therefore, a new framework for regulating is needed – one in which regulation follows biology, not one that tries to make biology obey the law. In order to bring about this framework, Alastair explained a series of steps are required, including: collapsing the phases; testing using real world data; using patients as a resource; and utilising social media to spread to word and gather data.

Innogen’s Scientific Advisor, Joyce Tait, followed with a discussion on upstream and downstream regulation, in particular the need to balance top-down regulation of products and processes with bottom-up engagement and dialogue with stakeholders while maintaining a democratically governable system.

As Joyce explained, there is a need for smart, adaptive governance of innovative technology with both upstream and downstream components, including: regulation that can be modified in line with changes in risk assessment; recognising regulation’s role in constraining and enabling innovation; balancing the risks and benefits to people and the environment; balancing the interests and values of ALL relevant stakeholders; and being explicit about political influences on policy decisions.

Moving on from Joyce’s discussion, Ed Godber (GlaxoSmithKline) took the session to a more economic level. As he explained, fundamental changes on the demand and supply side for life science innovation are leaving the current system of regulation and public sector investment exposed. Ultimately, the rules that applied well to the era of blockbuster drugs and now having a distortive effect, and we are paying a penalty for not having a more adaptive, localised and collaborative model of regulation.

As a result, cultural productivity is critical to the life science model, including: patient accountability beyond consumer health; personalised outcomes vs personalised medicine; rule transparency in regulation; and remission from flare-ups in industry ways.

Alessandro Rosiello (Innogen Edinburgh) continued in the economic vein and concluded with a consideration of the effect of various factors on drug development performance, including R&D funds allocation across therapeutic areas and the proportion of biological molecules in the drug development portfolio. Ultimately, the empirical data from these factors has shown that a correlation exists between performance variables and the per-capita growth of biopharmaceutical firms’ revenues – an analysis that will hopefully be widely applicable across sectors.

EGN Conference 2013 -- Opening provocation

by Emma Frow - Genomics Forum Associate Director and Lecturer in Science & Technology Studies, University of Edinburgh

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It’s a beautiful spring morning in Westminster, and the cherry blossoms are in full bloom. A fitting occasion to gather and celebrate a decade’s worth of achievements of the ESRC Genomics Network.

The conference opened with a tantalizing film clip (by filmmakers-in-residence Cameron Duguid & Lindsay Goodall) in which several EGN researchers grappled with the question ‘What is genomics?’…more on that later! Genomics Forum Deputy Director CatherineLyall then welcomed everyone to the meeting, and noted that poet-in-residence Samantha Walton will also be capturing this event in verse.

Adrian Alsop (Director of Research at the ESRC) provided some opening reflections regarding a decade of significant change for the ESRC, noting several significant shifts that have taken place in research policy and strategy over the lifetime of the EGN. Notably, ‘impact’ has become an increasingly dominant narrative for UK research, and the ESRC has been influenced by engagement with EGN researchers to define and support a definition of impact that embraces a wide variety of activities. A second big change that the ESRC is working with is the rise of an industrial strategy for science, one that strives to scale up industrial biotechnology with the promise of promoting health, wealth and an increasingly sustainable bioeconomy. Growing investments in ‘big data’ and the increasingly global character of social science research are two further changes influencing the context in which the ESRC operates. How to analyse and engage with these changes is an ongoing challenge and opportunity for social science research.

Adrian noted that EGN research has kept pace with several of these broader changes, and suggested that the interface between the life sciences and social sciences will continue to be a major theme for the first half of the 21^st century. Maintaining quality, impact, and independence in social science research will be critical.

We then moved on to a provocation by Roger Pielke entitled ‘Five Lessons of Science Advice.’ Roger highlighted the ongoing relevance of this topic by flagging up George Monbiot’s column in The Guardian yesterday, which focuses on the role of science advice around the current debates on bee health and pesticide use in Europe. 

Roger drew on over a decade of research, and specifically a series of interviews he has done with 7 US Presidential science advisers, to offer some key lessons about science advice, with some great cartoons to accompany these thoughts: 

Lesson #1: Science advisers are not superheroes. There is still a widespread expectation that ‘science speaks truth to power,’ and scientific evidence should be able to tell us what to do in tricky political situations. The reality is a bit more complicated, and the path between scientific knowledge, advice and decision-making in democracies is messier.

Lesson #2: ‘Science advice’ is a misnomer. Roger argued that we should be thinking instead in terms of ‘political advice.’

Lesson #3: Political advice from a science adviser can take multiple forms. Using a lively example about finding somewhere to eat dinner in London, Roger outlined 4 idealized categories of advice about science, which are expanded on at length in his book The Honest Broker. 

Lesson #4: Institutions matter. Institutional structures can end up having significant effects on decision-making practices, and we need to be sensitive to these broader factors. Roger gave us the example of the US President’s science adviser, who is formally positioned outside the President’s ‘inner circle’ of advisers (in part because science advisers can be called to testify in front of Congress, a level of exposure that precludes participation in highest-level decision-making). 

Lesson #5: “Politics is more difficult than physics” (a well-known quote from Einstein). Political thinking is very different from scientific thinking, and in practice science advisers need considerable experience in politics to do their jobs.

Roger concluded by saying that in the US and Europe, science enjoys enormous respect and authority, and that the ‘mythology of heroic science advice’ lives on – with a growing role for science advice currently being highlighted by institutions including the United Nations and the UK House of Lords.