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 Three: The Past, Present and Future of Responsible Innovation

Options for Strengthening Responsible Research and
Innovation

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

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What’s not to like about responsible innovation? I mean, who would rather have irresponsible stagnation? But even if we think the first of these sounds better, we might still ask where the term ‘responsible research and innovation’ (RRI) has come from, what it means, and where it is going. These were the framing questions for the first plenary session on Wednesday morning. In introducing the session, chair Hub Zwart (Nijmegen) raised two further critical questions to set the stage for the provocations and discussion the followed. First, he asked whether RRI reflects a paradigm shift away from more traditional ‘ethical, legal and social’ approaches to studying innovation. And second, he asked what the role of social scientists might be in the context of RRI – is it to help organize and mediate responsible research, or is there space for a more critical role?

A key goal of responsible innovation that was highlighted throughout the session was the opening up to wide(r) deliberation some fundamental questions about the purpose and direction of innovation. Embracing this spirit of ‘opening up’, Richard Owen started the panel discussion by asking the audience what they understood by the term ‘responsible.’ He then drew our attention to two central ideas of ‘care’ and ‘responsiveness.’ Crucially, starting with these ideas helps us get away from a simple assessment of innovation in terms of risks and benefits, which has become a dominant and often unproductive evaluative framework for new technologies. But it doesn’t eliminate the broad challenge of how to pursue innovation under circumstances of uncertainty.

René von Schomberg presented a definition of RRI as “a transparent, interactive process by which societal actors and innovators become mutually responsible to each other with a view to the (ethical) acceptability, sustainability and societal desirability of the innovation process and its (marketable) outcomes and impacts.” His remarks focused on the management of innovation, drawing our attention to stakeholder involvement and the distribution of labour and tasks in the innovation process that might stem from RRI. He proposed that RRI does mark a ‘paradigm shift’ in research and innovation policy, and noted that RRI is likely to be incorporated into the European Commission’s Horizon 2020 research framework.

Hugh Whittall reflected on how the Nuffield Council on Bioethics has been thinking about issues like responsible innovation. Hugh proposed that RRI does seem go beyond the traditional ‘ethical, legal and social issues’ approach to studying new technologies, but suggested that it should be accompanied by a broader vision of ‘public ethics’. This is an idea that the Nuffield Council have been working with in a recent report on emerging biotechnologies. They see a focus on public ethics as a way of opening up and reframing discussions to help bring public values to light in technology choice and democratic decision-making.

Using data gathered by the OECD, Iain Gillespie showed the clear links between innovation and growth in economies around the world. He suggested that both the public and private sectors have ‘an economic and moral responsibility to innovate,’ but that investing in the ‘right’ innovation is also part of this responsibility. He suggested that innovation and responsibility could become mutually empowering ideas, and sees responsible innovation as a potential ‘New Enlightenment,’ one that puts society back at the core of the innovation enterprise.

Jane Calvert reflected on her experiences as a social scientist deeply involved with the synthetic biology research community. She noted several positive aspects of the growing emphasis on RRI in her work, suggesting that had the potential to foster genuinely interdisciplinary and collaborative research. But she also raised some concern about social scientists being cast in a service or midwifery role (to ‘deliver’ RRI on scientific projects), and asked how we might ensure the independence of social science research when we are becoming increasingly attached to large scientific projects. And she also raised the question of whether how we should balance the ideas of collective responsibility and individual responsibility in future innovation.

A lively discussion ensued, raising questions about what might count as an ‘irresponsible’ innovation (with the ownership model of breast cancer genetic diagnostics and financial instruments like asset-backed securities offered as examples); about whether RRI promotes a focus on ‘innovation’ at the expense of other values; about the relationship between innovation and governance; about the risk of RRI turning into a form of stealth advocacy; about whether the concept of RRI is predominantly focused on high-tech, radical innovation as opposed to the incremental innovation; and about the implementation and evaluation of RRI in practical terms.

Over morning tea and during lunch, I heard several conversations in the Great Hall that picked up on issues raised in the panel discussion. Some weren’t convinced by the idea of thinking about innovation in terms like ‘responsible’ or ‘irresponsible,’ others wanted to know more about ideas of ‘frugal innovation’ and ‘slow innovation’ that panelists had mentioned (with the suggestion that these might be more ‘responsible’ forms of innovation in some way), and others still were skeptical about how responsible innovation could be translated into practice and evaluated. To my mind, the general skepticism I heard was interesting in at least two respects. First, it suggests that there is need for further discussion and clarification of RRI, and perhaps some experimentation to explore what it might come to mean in practice. But simultaneously, the types of questions and concerns being raised highlighted to me that the term ‘responsible research and innovation’ is already doing something important – it is provoking broader discussion about the role and purpose of innovation, and it is more explicitly putting values on the table as something to be discussed.

EGN Conference 2013 – Parallel One: Democratising Sequencing: Next generation sequencing and its social, political and ethical frictions

by Simon Read - PhD Student, Cardiff University School of Social Sciences

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The first parallel session of the EGN Conference, chaired by Dr Ruth McNally, concerned itself with debates on open science and its particular resonance in the field of next generation sequencing.

Dr Nick Loman opened proceedings by providing an overview of the crowd-sourcing phenomenon associated with big data. Having started by outlining the volume of sequencers across the world, as well as those involved in the analysis of the results they are offering, Loman then offered a particular case study of an outbreak of E. coli in Germany between May and July 2011. In this example, which resulted in nearly 4000 cases and over 50 deaths, he highlighted the impact of crowd-sourced analysis in offering new interpretations of the ‘sproutbreak’ crisis. The academic community engaged with the available data to present revised analyses from those that initially emerged stating that the strain of E. coli had never been seen before. For instance, academic blogs highlighted similar strains between this particular outbreak and other ten years in the past. The benefits of collaborative and competitive crowd-sourcing were a much more rapid analysis of data which influenced the political response. In addition, the use of blogging, wikis and Twitter enabled, to some degree, subversion of commonly accepted academic publication practice with journal exclusivity being sidestepped in this particular case.

Dr Sabina Leonelli followed this with a summary of her research into open science and ‘data journeys’. The open science movement had invited exploitation of the Internet as a public platform for consultation, exchange and critique. In turn, this facilitated exchange of knowledge claims as well as data, techniques and materials thus driving collaboration and widening participation. However, the novelty of this development was questioned by Leonelli as well as whether free access to all information was practically available given its quantity and consequent immobility. This ‘data journey’ was the core of Leonelli’s research with its various stages being shown to involve huge amounts of labour and to provoke an array of conceptual, material, technical, social, financial and ethical concerns.

Finally, Dr William Spooner closed the session with a presentation that sought to bridge the gap between big data and its practical application. The processing of NGS data typically involves complex routes of independent software components that often provoke variability in response to the same data set. Additionally, ethical concerns around the identification of those individuals submitting their genetic data have been highlighted in recent months. In spite of this, progress is being made in this field. The key issue is how this can be applied effectively within the NHS.