Welcome to the Genomics Forum blog


Based at The University of Edinburgh, the ESRC Genomics Policy and Research Forum is part of the ESRC Genomics Network and pioneers new ways to promote and communicate social research on the contemporary life sciences.

Tuesday 24 September 2013

ESRC Genomics Forum Playwright presents new genomics-inspired play

Playwright-in-Residence Peter Arnott
Even though the work of the ESRC Genomics Forum officially ended at the start of June this year, its legacy lives on. Peter Arnott was Playwright-in –Residence with Forum from 2011 until 2012. As a direct result of this residency, Peter has now completed a genomics-inspired play which will receive a rehearsed reading at Edinburgh’s Traverse Theatre, later this week.

In an interview on the theatre’s website, Peter explains how issues around the life sciences interweave with and influence the lives of the characters in his play, with dramatic consequences. He explains:

“What I'm trying to do in the play is look at what the new knowledge we have about ‘how’ life works, in order to consider the more traditional playwright's territory of ‘why’? There is a really urgent question for me, which I think feeds into absolutely everything we ever talk about in the theatre and in new writing: ‘How do we value human life now that we understand how it connects to a universe where nothing has any more value than anything else?’

“If we're not created, we are accidents, and need to find a new reason to care.

“So I'm looking at a family whose life is, well, perfect. They're comfortable, civilised, well intentioned (or pretty much). The drama comes from biology...the unnegotiatable facts of life and death.

“The play is about what happened to us when we're suddenly smacked in the face by something that forces us to recognise ourselves for what we are... with the ‘new’ knowledge. And to wonder how it changes us.”

Group Portrait in a Landscape (Et In Arcadia...) will be performed as a rehearsed reading at the Traverse Theatre on Thursday 26 September at 7.30pm. For further information and to book tickets visit: http://traverse.co.uk/

The full interview with Peter Arnott can be read at: http://traverse.co.uk/news/peter-arnott-presents-new-play-this-week/

Thursday 9 May 2013

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

by Chris Berry, Genomics Forum Press and Communications Officer

#egn13

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.

Wednesday 8 May 2013

EGN Conference 2013 - Poetry in Residence

by Samantha Walton - Genomics Forum Poet in Residence

While dedicated bloggers across the Genomics Network were providing detailed accounts of arguments raised and research outlined in panels and plenary sessions at the EGN Conference 2013 , the TTAGGG poetry sequence began to be mapped. In her welcoming address, Catherine Lyall introduced delegates to the sequence and to the presence of a poet at the conference as an ‘experiment’, a term which I thought summarised the project with particular accuracy. In my own description of the sequence in the conference programme, I had urged delegates to get involved in the following (I hoped, persuasive) way:

TTAGGG is an open source poetry sequence generated through contributions from EGN 13 delegates. Contributions may be segments of verse borrowed (or hacked) from existing poems or prose, or they may be individual words or fragments of ‘found’ text snipped from the conference programme or heard in presentations and discussions. You might write your own poetic responses to ideas generated throughout the conference, or to the poem itself as it is built and modified online. An experiment in artificial evolution in the creative commons, the TTAGGG sequence will store complex information, respond to its environment and be a thing of strange beauty, open to modification, enhancement, repetition and mutation.

While the poetry I had been writing ‘in residence’ at the Forum was mostly concerned with epigenetics, I saw the TTAGGG sequence as a way of testing the notion of the poem as a mode of recording personal emotion expression. This was in part an attempt to move away from the kind of anecdotal lyricism that is often the obvious poetic response to ‘difficult’ issues in medicine and science: it seemed there were far more interesting and relevant ways of considering how developments in the life sciences could be discussed in poetry than imagining how they might make a single poetic speaker feel. I’ve been interested in the representation of medicine in literature for some time, and I wanted to produce something quite different from the kind of first-person poetry that frequently comes out of such interchanges – a frustrated and often powerless voice, an ‘I’ trying to understand how developments may affect my understanding of my body, myself. It wasn’t that I found such personal insight insignificant, rather it seemed that to do justice to the unique interface between the life sciences and social sciences achieved throughout the run of the Genomics Network, an approach which incorporated a range of perspectives and modes of address needed to be attempted. By eliciting contributions from delegates, and by trying to depersonalise my own contributions to the sequence by using found text, snippets of conversations and presentations, I hoped to sidestep the responsibility of providing a subjective account of such a diverse programme and try to achieve the kind of plurality, performative objectivity and variation of thought and insight that these complex issues deserved.
           Getting policy makers, social scientists, philosophers of bioethics and life science researchers to write poetry, even in little bits, proved, at first, to be a challenge. There’s something about poetry … for a start, people think they can’t do it (make words sound nice etc.), or they feel embarrassed about the image of Romantic swaggering and detached pondering that the word ‘poetry’ summons up. Also, in the midst of the EGN conference, when so much demanding critical, sociological, ethical, scientific, political and philosophical thought is taking place, I suspect that for some delegates it seemed like too much of a mental shift to start thinking ‘poetically’, as if thinking poetically could lead you astray from the serious topics under consideration. I think these reservations, this division of mental labour, suggests that poetry is often perceived to something other than critical public discourse. I haven’t conducted my research yet, but I’d like to postulate that a survey of public attitudes would return the conclusions that the best poetry consists of moving responses to grand themes like love and loss, making it something readers withdraw to help clarify or find voiced their own private troubles and joys. Poetry is often treated like this – an imaginative and aesthetic escape from public life and social realities, providing an affective insight into a kind of subjective territory somewhere between lifeworld and the public sphere. Like much of the ‘health’ themed poetry I read through the medical humanities, the poetic response to genomics, confirming to this idea of poetry, might just have to stop at bittersweet and aggrieved responses to difficult questions and controversial innovations: “Yes, science may say ‘I’ am my genes, but I know better, I can appreciate beauty and feel love, you can’t quantify that.”
Although I don’t doubt that science (even qualitative analysis) can’t process many of the concerns that are central to various poetic traditions (beauty and love included) I can’t help but feel that in poetry’s wider readership, the idea that poetry provides a unique medium not only for responding to, subverting, translating or resisting important and complex new ideas, but actually working through those ideas, testing them, and even contributing to their development, seems to have been, if not forgotten, then perhaps sidelined. This perception seems to run counter to the many ways that poets have written of and using specialised discourses of political thought and scientific enquiry: an incredibly general account might allude to Dante’s interrogations of political practice and faith, Elizabethan discussions of the body politic, Metaphysical poets’ yoking of love and religion to scientific and geographic discoveries, the Romantics’ testing of associationism and the profound engagements with science – from theories of relativity to Heisenberg’s Uncertainty Principle, Mendelian genetics to Habermasian theory – found in Modernist and contemporary late-Modernist verse. As such, the premise of the TTAGGG Sequence was not just to provide a counter account of the day’s discussions and events – although one delegate did tell me that following the development of the sequence on Twitter provided something of a disruptive echo to the more formal discussions taking place in sessions. Instead, I hoped the fragments, commentaries and contributions might contain questions, provocations and alternative accounts which could feed into a serious discussion of the main issues of the conference. A contemporary poet I admire, Sean Bonney, has spoken of the possibilities of poetry in this way: “there’s certain poems that give me an information, an account of a social reality, that other types of writing don’t. It’s something to do with the speed of connections through the work, the intensity of the communication: conjunctions and intensities that put information across in a way that I don’t find anywhere else.”
I don’t know if the TTAGGG Sequence achieved this, but part of its ‘experimental’ nature was the acceptance that failure might lead to a better understanding of how to frame the question, or what the problem might be. Of the definite successes of the project, I count highly the enthusiastic and intrigued responses I got from many conference delegates. It was refreshing for me to explain how my project tried to participate in the debates of the conference, and to find that though I was coming from a different epistemological position, there was some common ground, and much openness for engagement. The actual poetic contributions I got were delightfully various. Some followed tradition verse structures (the clipped form of the Haiku appealed to many) while others concentrated on the rhetoric of social science and policy communication – the repetitions, freewheeling metaphors, strangeness and contradictions of the language employed in this supposedly objective discipline. In my own contributions, I was surprised by how quickly I fell into an imperative register and how the demands of writing on the spot led me to use the present tense, often utterly eschewing pronouns and prepositions. While anonymity was guaranteed for delegates who wrote their contributions on cards and posted them in the ‘TTAGGG Sequencer’ (my gratitude to Steph Wright for helping me build this complex machine!), additions from private Twitter accounts constituted more of a public statement, and I’m grateful to those who spoke out in this way. I don’t think anyone used my password and took up the offer to sign in to the TTAGGG Twitter account and tweet impersonally from there, which gives an interesting insight into possible concerns about invasions of privacy and the dangers of open access in a field where large data sets and their possible uses is a major point of ethical and legal discussion.
The TTAGGG Sequence will remain on Twitter and can be found at #egn13poetry. However, I am currently working on a number of different ways to manipulate the sequence. In a nod to a purely scientific approach, I am ordering it in simple chronological order (fig. A). In honour of traditional poetic formal constraints, I’m using a programme that organises individual lines into rhyming couplets (and only removing auto-rhymed lines) (fig. B). Finally, I am asserting the troublesome aesthetic and subjective authority of the poet by organising the text into what seems (to me at least) a coherent poem (fig.C). I hope to perform some of it at Syndicate, a new media poetry series I co-host held at Inspace in Edinburgh, on 21st May.
What the opportunity to act as Poet in Residence at the EGN Conference 2013 and the Genomics Forum through April gave me was the invaluable space to write and also to reflect on the possible modes of communication between poetry, science and social study. I’ve always been interested in the critical potential of poetry, so the insights I have gained ways of approaching and understanding public ethics, cultural differences and social impact within the social sciences have encouraged me to reflect on my own practice as a poet and researcher. I am incredibly grateful for the welcoming and generous response I received at the Forum. I hope the exciting interactions between art and life science studies fostered here will continue in many forms in the future.


Cuts from the TTAGGG Sequence

Fig A.  Chronological

opening provocation: promise/ peril         
what is ... what ... um it's ... a hard question         the people legacy
borrowed from the network
globalisation of the subjects we address
challenges around life s/ on the brink/ of major scale
these bugs/ can eat their own waste!
ignore these/ listen to them/ pull out the science, hold it up/ an heroic vision in messy places
messy like democracy/ sounds like science, golden age/ speaking truth to power
dossier of compromise/ science disappears/ elite compromise vs. idealised advice/ pure & removed: the science dictates

Fig. B.  Rhyming Sequence

Transcription is not fit matter for poesy
TTAGGG poetry sequence is under citizens enquiry
Replication is serious flattery
The enlightenment is not the enemy
Become knowledge, circulate freely
From cutting paper, to CAD molecule, a filmmaker's journey
The deficit model is bankrupt, but has so much currency

If someone mutated my DNA would this then lead my soul astray
Climate change fury, decimation of mankind, fascinating, play

Please capture my core, decorate your DNA for your children
My sweetheart took his burnt toast & departed with his cellular automaton. 

Infinitesimal paper & scissors that should play with hierarchies
Public & private together in this space, between plate & lip
millions of wells reading sequences
Of shrug biologists who say PUBLIC but face but a sacral population's
extended phenotypic structure fluffed to rubric lattices

Fig. C. Poet as Structuring Process

We start with an opening provocation,
under the sign of Watt & ether
shouting out to find a common ground
There weren't too many rules, only
you have to lock people together
for days to get them to understand one another
     's vocabulary
Converting jargon into something
people can understand, that's the knack
Feedback loops between consumers & providers are fraught
with the sheer density & complexity
           of poetry refusing to cooperate
ignore these, listen to them
pull out the science, hold it up: an heroic vision in messy places
 (messy like democracy)
this is sounding like science speaking truth to power
public understanding is itself a metaphor

I liked the people
but I have just one question    a critical remark
 really
What … what would NA12878 do?
what is ... what ... um it's ... a hard question        
it’s a hard thing, being a critical friend: waxing or waning,
meeting for breakfast etc., having a life
talking through issues
etcetera.

Imagining the genome
retro futures under review
the myth of science lives on
a new golden age a newly acceptable Enlightenment continuing
between Adam Smith's tomb at Canongate Kirk
& the cone on David Hume's head
Fluid networks permeate the life science web
philosophers of the future rebound
reflecting on the sound of glitchy data
For philosophies read textual
error: ask a stem cell what it is, res public collaboration shaving words off acronyms
           the TTAGGG Cloud: impossibly linear Wordle!
Perfect distribution of emphasis cut with rigour & balance!
nothing in life expresses ©  like an MOU/kou/□/xxx
we don't yet have a language that doesn't begin
with an assumption of separateness

EGN Conference 2013 – Plenary Five: The EGN Impact Agenda

by Claire Packman, Egenis Communications Officer

#egn13

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 – 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

#egn13


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 – Plenary Four: The “people legacy” of the Genomics Network

by Christine Knight, Genomics Forum Senior Policy Research Fellow

 #egn13

People power

The ‘people legacy’ session at the EGN Conference came at an interesting time for me personally. I’m about to be made unemployed, and to go along to a session celebrating the capacity-building function of the network – its ability to launch its graduates and postdocs on successful careers – brings mixed feelings. The rather significant unsaid at this week’s conference is that the end of a major research council investment, such as the Genomics Forum and the ESRC funding for the three EGN centres, brings at least the potential for large-scale unemployment. 

I can’t speak for the other centres in the Genomics Network. But at the Forum, although the threat of mass unemployment has receded, several staff (myself included) still don’t know where we’ll end up next. That’s not quite true – I know I’ve got a well-deserved and well-planned summer break first of all. But come the autumn, I may or may not have my dream fellowship funded elsewhere at the University of Edinburgh. And if I don’t, who knows?

Planning a career break is not something I’ve done lightly, and I certainly wouldn’t change the decision. But there are moments when I do question my faith in my own employability, such as when I talk to other research fellows who’ve interviewed for the same fellowship schemes I’ve applied for, and then been turned down. Am I just demonstrating breathtaking levels of Gen-Y arrogance? Will I find myself locked out of academia for good, REFability or no REFability? 

At gutter-gazing moments like these, it’s always good to go to a conference session dedicated to the stellar success of former EGN PhD students and fellows. 89 PhD students completed during the lifespan of the EGN – a very considerable achievement, as chair Steve Sturdy pointed out, on top of the core research outputs of the centres. Of these, 4 spoke about their postgraduate and postdoctoral experiences in this session. 

Heather Walmsley studied at the Lancaster branch of Cesagen and is now Banting Fellow and Postdoctoral Teaching Fellow at the University of British Columbia. Hristina Petkova did a PhD in health economics at Egenis and now works at King’s College London. Farah Huzair studied agricultural biotech innovation at Innogen at the Open University, moved to Canada for a postdoc at Dalhousie, and has now returned to Innogen at the OU. Jonathan Suk, a former Genomics Forum Research Fellow, now works for the European Centre for Disease Prevention and Control. 

These are sparkling stories and they go some way towards justifying my belief that I should dry-clean my interview suit and polish my shoes, just in case. But there are also stories behind these stories that I’d like to hear. All 4 of the speakers in the session had made significant moves – across the pond, the North Sea, or the country. Were these upheavals wanted? Were they planned? Are even the most successful junior academics subject to circumstance, and the assumption that we can pack our bags and our lives at a moment’s notice and traipse across the world to follow a job? What becomes of friendships, relationships and family ties in these situations? 

There are certainly rich personal gains to be had out of academic adventure, and I’m not (just) talking about money and professional success. But are there other personal costs? What is gained and what is lost when Dr 20-Something packs up and ships out? These aren’t just gains and losses for the individual, but for the institution that has invested time and money in her or his training. 

One of the reasons I believe the EGN has been so successful – and we heard much about its success from Paul Boyle, Chief Executive of the ESRC, in his closing remarks later in the day – is the employment security it has offered to junior and senior staff alike. My own 5-year postdoctoral contract is extremely unusual, and my peers across the network have been similarly fortunate. This security has nurtured capacity and careers, allowing enormous scope for creativity in research, knowledge exchange and public engagement. 

At this uncertain moment, I can only express two hopes. First, I hope that this investment pays off, for me and others in similar positions across the network. Second, I hope the EGN’s ‘people legacy’ reminds the ESRC and other research funders of the value of investing in early-career security and stability. 

Wednesday 1 May 2013

EGN Conference 2013 – Parallel Two: Future Food

by Christine Knight, Genomics Forum Senior Policy Research Fellow

 #egn13

Not all conference panels really work. Quite often, I’m left with the sense that several people talked briefly, even superficially, about disparate topics, and there wasn’t enough time at the end for the chair to draw them together into a coherent discussion!

This panel at the EGN Conference was delightfully different, though the topic is serious. Dan Crossley (Food Ethics Council), Ann Bruce (Innogen), Richard Twine (University of Glasgow) and Neil Stephens (Cesagen) each spoke briefly but in detail about some aspect of meat production and consumption – from reducing how much meat we eat, and greenhouse gas emissions from livestock, to the possibilities of veganism, vegetarianism and ‘in vitro meat’.

It was an incredibly rich session and it would be impossible to do justice to all four presentations here, so I’m not going to try. Instead, here are some thoughts from me sparked by the presentations from Dan Crossley and Richard Twine in particular. What follows are necessarily my personal thoughts, and not to be attributed to any of the speakers, the Genomics Forum or Network!

Having read the abstracts for the session in advance, I went into the lecture theatre willing to feel grumpy – mostly (with apologies to Dan Crossley) because of the Food Ethics Council’s position on ‘less but better’ meat consumption, and valuing the meat ‘we’ eat more. To me, this rather smacks of selling out – if meat consumption is wrong on so many levels (which I think it is), why take a ‘softly, softly’ approach?

I’ve written on my personal blog before about the UK Government’s approach to reducing (red) meat consumption, and there are strong parallels here. Since we know that (red) meat consumption has a linear association with certain serious illnesses (rather like cigarettes, there’s no level of consumption that doesn’t increase your risk), why tell people to reduce, when the recommendation should be to cut out? Seemingly, that’s just too much radical change – not just for consumers, but for the meat industry. Insert cynical emoticon here.

I can also see the other side. Only 3% of the UK population is vegetarian, let alone vegan. Amongst social science academics, that figure would be a bit higher (though based on last night’s conference dinner, perhaps not as high as I would think). Amongst my friends, the figure is higher still – somewhere approaching 50%. So it’s easy for me to forget that for many people, vegetarianism is still a kooky, socks-and-sandals, why-would-you-do-that kind of activity. And rather like capital punishment in the 19th century, meat consumption may well in practice best be reduced by degrees, not wholesale. Get people used to the idea of meatless meals, increase awareness of industrial farming practices, and meat consumption will gradually go down – or so the theory goes.

I can see that over time this strategy will likely lead to overall reductions in meat consumption. And if that’s what you’re aiming at, all well and good. But I can’t actually see that this strategy will lead more people to become vegetarian. Instead, it’s more likely to make people think that eating meat is ok, so long as they do it ‘with care’. And for the life of me I can’t see how the definition of ‘care’ can include slaughtering a healthy, sentient creature without its consent, in order to eat its flesh.

So all in all I went into the session willing to feel grumpy, and I came out rather grumpy! The main source of my grumpiness is that animal rights were barely mentioned in a conference session that was all about meat. Indeed, it seems that animal rights aren’t really that relevant to discussions about meat-eating, vegetarianism and veganism anymore. Instead, it’s climate change, environmental sustainability and public health. I was extremely glad when Richard Twine closed by gently encouraging audience members to read more about the relationship between human beings and non-human animals, pointing out that animal ethics tend to get sidestepped in current debates in favour of the ‘easier’ environmental and health issues.

Even 10 years ago, this wasn’t the case. Research on vegetarianism in the West consistently showed that animal rights were the motivating factor for the majority of vegetarians, admittedly with personal health a close second. If current environmental concerns can force a major reduction in animal slaughter, I won’t be complaining. But whether they can fundamentally change how the majority of humans conceive their relationship with non-human animals, I’m not so sure.  

EGN Conference 2013 – Plenary Two: Innovative strategies for engagement through the arts

by Claire Packman, Egenis Communications Officer

#egn13
 
In the spirit of this session, about innovative engagement through the arts, this blog is written in the form of haikus - with apologies to Samantha Walton

For Alistair Gentry
Your art enlightens
Your words provoke, creating
Laughter and ideas


For Peter Arnott
Climate change fury
Decimation of mankind
Fascinating play

For Lindsay Goodall
The Glasgow Effect
Obscures the truth so your search
For a title goes on

For Cameron Duguid
From cutting paper
To CAD molecule
A filmmakers journey

For Pippa Goldschmidt
Posit hypothesis
Resarch your argument
Create conclusion

EGN Conference 2013 – Parallel Two: Governance of New Technologies

by Elisabeth Barlow, Innogen Communications and Policy Officer

#egn13

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 – Plenary One: What's special about scientific advice, governance and policy-making in the life sciences?

by Chris Berry, Genomics Forum Press and Communications Officer

#egn13

The first plenary session of the EGN 13 conference examined the nexus between scientific advice, governance and policy making, with specific reference the life sciences. As the chair - Innogen Director, Professor David Wield - indicated in his introduction to the session, The Genomics Network has been highley successful at working with policy makers, both across the UK and internationally, even though engaging the policy community in issues relating to social implications of genomics is not always straightforward.

The first of four speakers to offer their perspective on the session's topic was Professor Brian Collins - a former Chief Scientific Advisor (CSA) to BIS and the Department of Transport. Professor Collins used two case studies from his time as a CSA to illustrate how differing approaches to dealing with policy issues can be progressed.

The first example related to Biofuels, which are already economically important to countries such as Brazil, and potentially have increasing significance for the UK. Professor Collins illustrated a number of confliciting issues impinging on the development of UK biofuel policy at the beginging of the last decade, including: the drive for biofuel crops impacting food production; the fact that biomass is much more suited to producing heat/energy than vehicular fuel; responsibility for different policy areas for biofuels resting with different government departments; and the fact that international agreements framing biofuel policy were already in existence. Through a coordinated approach by scientific advisors from different sections of government, it was possible to address these conflicting demands and produce an approropriately framed policy.

Following his second example, relating to the policy on the use of non-human primates in medical research, Professor Collins teased out some of the factors important to the approach taken by CSAs, including:
  • Whether emphasis was placed on preventing or curing an issue;
  • The need to be a "critical friend" when offering scientific advice; 
  • The ability to work cooperatively across government departments; and 
  • Maintining an external view, through links with academia and other CSAs etc.
Andrew Miller MP - Chair of the House of Commons' Select Committee on Science and Technology, offered insightful overview of the importance of scientific advice from the perspective of a policy-maker.

He provided an overview and the structure and work of the Select Committee - how through undertaking enquiries it ensures that government policy is based on sound scientific advice, and how it can also ensure certain issues are pushed onto the policy agenda. He also pointed out that as the Committee is not necessarily composed of scientific experts, its members also rely on scientific advice.

Mr Miller then went on to speak specifically about policy relating to the life science sector, and how its increasing socio-econimic importance brings both opportunities and challenges for policy-makers. For example, the life sciences are unique insofar as they form a central componenet in a number of government areas, including health, enterprise, agriculture etc. Fortunatley, there is much expertise to draw upon to help formulate life sciene policy relating to different government departments, as each of these now has a team of dedicated scientific advisors.

Andrew Miller concluded his presentation by pointing out that to be truly effective scientific advice (including that relating to the life sciences) needs to be transparent. Currently, scientific advice is in a healthy state, and it is his Committee's objective that this should continue by ensuring goverment draws upon appropriate advice in its policy decision-making.

Jim Philp - Science and Technology Analyst with the OECD - brought an international insight to the relationship between scientific advice and policy development. Within his role this involved analysing the cost, risks and benefits of particular policy directions.

He indicated that there were a number of factors inherent in policy development that impacted upon how scientific advice influences this, such as governements working to five year, as oppossed to 50 year cycles. Conversely, exhisting - but overley complex - regulatory regimes can inhibit the timely delivery of beneficial biotechnology.

Focusing on the example of biofuels, Philp presented a case study on the parallels between the adoption of previous fuel sources - coal, oil etc. - and the policy challenges in relation to the acceptance and viability of new fuel sources produced through biotechnology.

He closed his presentation by concluding that in order for advances in biotechnology to gain societal acceptance, a policy roadmap informed by transparent scientific advice is required.

Innogen's Professor Joanna Chataway provided a social science perspective on UK public private partnerships in the field of stratified medicinie. Stratified (or personalised) medicine involves using biotechnology to tailor treatements to individuals or specific groups of people.

Professor Chataway identified that in the UK there was a growing number of public/private partnerships aimed at developing stratified medicine. The UK Life Science Strategy puts this kind of partnerships and coolaboration at heart of policy in relation to developing such treatments.

This has resulted in a lot of scientific research and experimentation, but this can often be fragmented, and there is a limited evidence base and lack of evaluation in relation to its efficacy. Professor Chataway concluded by identifying the role enhanced scientific and social scientific advice could play in contributing to policy responses to this area of bioscience.

EGN Conference 2013 – Parallel Two: Epigenetics



by Alan O'Connor, Research Student Cardiff Law School

#egn13

In the second set of parallel sessions on day one was the session on epigenetics.

Marcus Pembrey provided an introduction to the field of epigenetics.  He outlined a number of epigenetic mechanisms which are associated with regulating gene expression, including DNA methylation, histone modification and regulation by micro RNA.  DNA methylation involves the addition of a methyl group to certain parts of DNA.  Where this occurs in gene promoter regions, it has the effect of silencing gene expression.

While it was always assumed that there were some epigenetic mechanisms involved in cell development, a recent advance has been in linking epigenetic modifications to environmental factors.  In particular, Marcus pointed to a number of studies which demonstrate how epigenetic markers are affected by early life environment and early life socio-economic position.

John Dupré discussed the enduring nature of epigenetic changes, including the methods of epigenetic heritability and their impact on evolution.  The nature-nurture distinction has perhaps outlived its usefulness as the interrelationship of the inherited and the experienced becomes more evident.  Epigenetics seems to rule out the gene-centred determinism that underlies some neo-Darwinist accounts of evolution. Epigenetic mechanisms point to a mode of inheritance involving genetic, epigenetic and cultural elements.

There is debate surrounding the mechanism of epigenetic inheritance.  Some evidence suggests that that epigenetic changes may be heritable during cell division, but this is controversial.  Other inheritance mechanisms may involve new exposure to environmental factors which bring about epigenetic change with each generation. This appears to have been the case in studies of rat maternal grooming patterns.

Sometimes discussion of epigenetics induces claims of neo-Lamarckism, but John highlights that while epigenetic inheritance does suggest the inheritance of acquired characteristics, it does not claim selective acquisition of adaptive characteristics.

Ilina Singh addressed some of the social scientific questions arising as a result of emerging epigenetic knowledge.  As the influence of environmental factors on development becomes clearer, there will be a growing space for social scientists to add constructively to the investigation of epigenetic causes of disease.

Increasingly, conditions affecting adults may be seen as developmental disorders with their origins early in life.  An ecobiodevelopmental approach may be necessary to properly address the interrelatedness of genes and environment and to identify the relevant actors.

EGN Conference 2013 – Parallel One: Global Health & Development

by Elisabeth Barlow, Innogen Communications and Policy Officer

#egn13

Innogen has a decade long track record in seeking to understand how innovation and capacities become sustainable in national health systems, and this session on Global Health and Development broke down some of its thinking. 

The message Julius Mugwagwa (Innogen OU) wanted you to take away from his opening presentation was: decision making matters. As he explained, evidence shows that health care is in need of strengthening, but a paradox exists given recent medical advances, increasing funding and expanded range of actors and institutional innovations. As a result, policy and decision-making systems will play a large role in health system strengthening. 

Using the examples of the Zimbabwean and South African national health systems and the International AIDS Vaccine Initiative, Julius explored innovative options for building long-term health system resilience and delivery capacity, including: sustaining and embedding projects, programmes and capacities in a health system that is viewed as important by all stakeholders; understanding that while more money is needed, so too are innovative ways of deploying it in health systems; and recognising that policy plays a crucial role. 

Rebecca Hanlin (Innogen OU) continued the discussion on capacity building. Focusing on global health partnerships, she began by defining capacity building at its micro (individual skills training and infrastructure support), meso (networking, learning and knowledge exchange opportunities), and macro (creation of a wider policy level enabling environment) levels. But why is this important? As Rebecca explained: there is a return to wider notions of healthcare, health systems strengthening and horizontal programmes; there are funding shortfall by donors and scientific hold ups; and a recognition of the growth potential more widely of local capacity. 

Ultimately, PDPs are a way of providing capacity building. By operating as ‘new’ institutional forms, they have the ability – but also the need – to: build crucial individual level skills in the scientific arena within developing countries, but also building meso level institutional and macro level enabling environment capacity. 

Geoff Banda (Innogen OU) also seized upon the issue of capacity by exploring a forgotten one. As he explained, academic and professional discourses tend to focus on technological capabilities, technology transfer, economies of scale, human capital, and markets for drugs; however, the capabilities surrounding the financing of working capital and capital investment and the role of financial institutions remain neglected.  

Drawing on the financing of antiretroviral drugs manufacture in Zimbabwe, Geoff sought to rectify the previous lack of discourse in this area by addressing sources of finance for working capital requirements and capital investment to import technologies, as well as the technological capabilities surrounding access to finance at pharmaceutical companies and technological capabilities surrounding loan origination at finance institution. His argument: finance is just as important as investment, production and linkage capabilities. 

Dermot Maher (Wellcome Trust) gave the closing response following Innogen’s presentations. Funded by Sir Henry Wellcome – a man equally known for his impressive moustache as he was for his impressive endowment – the Wellcome Trust is a global charity foundation dedicated to achieving extraordinary improvements in human and animal health. As an external stakeholder of Innogen’s work, Dermot recapitulated the themes from the previous presentations and underscored research capacity strengthening and the need for equitable partnerships.

Tuesday 30 April 2013

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

#egn13

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.