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A New Journey BeginsLife after the Network

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FEATURES

5Directors’ commentEGN celebrates the past and welcomes the future.

6Characteristic excellenceEGN Directors select feature articles from previous issues of the gen that exemplify the work of their Centres, including:

7Cesagen – Reconfiguring interdisciplinary researchArticle from September 2011 edition with comment from Professor Ruth Chadwick;

11Egenis – Is my genome I?Article from March 2006 edition with comment from Professor John Dupré;

22The Network’s ‘people legacy’A look out how EGN has nurtured social science expertise.

26‘Responsible Innovation’ and the life sciencesPerspectives on the socio-economic impacts of this new concept.

31The Network in numbersSome of the EGN’s key achievements in numeric form.

14Framing ‘excellence’, institutions and innovation in Africa Article from March 2006 edition with comment from Professor David Wield.

19Engagingly innovativeChris Berry examines a decade of EGN public engagement.

Welcome to what is both a special, and the final edition of the gen. After a decade of leading research and engagement on the socio-economic impacts of the life sciences, in May 2013 the ESRC Genomics Network will formally come to an end in its current form. This special edition of our newsletter will, therefore, look back at the substantial achievements of the Genomics Network, as well as looking forward to what the future holds for the Cesagen, Egenis and Innogen Centres, as they continue their work individually.

Many of the themes explored in the articles featured in this edition of the gen will also be explored further at the final ESRC Genomics Network conference – Genomes and societies: Global challenges around life sciences – which will take place in London on 30 April and 1 May 2013. We hope you can join us.

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ESRC Genomics Network A decade of excellence in linking life sciences, policy and society

The beginning of the new millennium marked a highly exciting time for developments in genomics and the life sciences. Following the cloning of Dolly the sheep in the late 1990s, 2000 saw the initial rough draft of the human genome made available. Through these advances it appeared that biological science was not only on the threshold of identifying the control mechanism governing all living things, but also the essence of what makes us human.

Yet whilst such ground breaking achievements in the biosciences were being made, there simultaneously appeared to be a ‘disconnect’ between these advances in life sciences and societal perceptions of their consequences. Would the age of biotechnology bring untold benefits, or might the application of these new discoveries become burdensome or even potentially dangerous?

It became clear that it was necessary to respond to this situation to ensure that engagement with emerging biotechnologies was not limited merely to research institutions, where they remained the property of scientists. Firstly, there was a need to develop an evidence base from research to identify the actual and potential socio-economic impacts associated with emerging areas of bioscience. Secondly, a ‘space’ needed to be created where stakeholders – including the public and policy makers – could examine and debate the consequences such developments might have for individuals, society and the economy, and what might be the most appropriate response to these. And so the ground breaking initiative that is the Economic and Social Research Council (ESRC) Genomics Network (EGN) was established in 2002.

During the course of the last decade the EGN has become the most significant group of centres in the world for social scientific research on genomics. The Network’s research has encompassed all aspects of developments in genomics and emerging developments in life sciences, ranging from synthetic biology through to DNA profiling and identity politics; from stem cell research, to plant and animal genetics.

Paul Boyle, Chief Executive of ESRC

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This research effort has involved hundreds of academics at all levels, establishing a substantial body of expertise that will continue to have a global resonance on the consideration of the socio-economic impacts of the life science for decades to come.

Whilst the canon of research undertaken by the Centres that form the Genomics Network is impressive, of equal importance has been the influence and impact this has had on the debate about genomics, and the development of policy resulting from this. Public engagement has been a core function of the work of the EGN, with each Centre using a plethora of approaches – including artistic residencies, science and social science festivals, public debates, multi-media projects, and direct engagement with policy makers and politicians – that have facilitated the consideration of genomics-related issues by UK and International stakeholders.

This special edition of the gen – the EGN newsletter – will elaborate on the work and impacts the EGN has achieved during the last 10 years, in what is a time of transition for the Centres that make up the Network. This year, 2013, will mark the formal end of the Genomics Network, and a new phase in the lives of the Cesagen, Egenis and Innogen Centres, the work of which will continue to be supported in various forms by the academic institutions that host each Centre. The end of the EGN will also result in the work of the Genomics Forum concluding in May this year, but not before it has been responsible for organising the final Network Conference, which will echo the themes of this newsletter, exploring the impact of the EGN and the continued influence it will have on the social and life sciences in the future.

When the ESRC supported the establishment of the Genomics Network a decade ago, all indications were that developments in biosciences would be significant, even if it was impossible to predict exactly how genomics and life sciences would advance in the succeeding 10 years. Also of major significance has been the impact of the EGN in influencing understanding and considering of emerging bioscience developments, with the Network being hugely successful in increasing knowledge of the socio-economic factors relating to the life sciences and engaging stakeholders in the debate around these. All those involved with the ESRC Genomics Network can be justifiably proud of what it has achieved during the last 10 years, and the influence it will undoubtedly continue to exert in the future. The Network has not only brought together social science and its natural and biomedical counterparts; it has also brought together different groups working in the social sciences and humanities, creating completely new ways and scales of cooperation. This has been important, and perhaps unexpected. �

Paul Boyle, Chief Executive of ESRC

“This year, 2013, will mark the formal end of the Genomics Network, and a new phase in the lives of the Cesagen, Egenis and Innogen Centres, the work of which will continue to be supported in various forms by the academic institutions that host each Centre.”

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Celebrating the past, and welcoming the futureThis final issue of the gen provides an opportunity for the directors of the ESRC Genomics Network (EGN) Centres to look back on the jobs their groups have done and to think about the shape of the future for social research around the life sciences.

It is clear that the EGN was set up at a key moment, shortly after the publication of the first draft of the human genome and when the promise of understanding genomes (whether of humans or of the crops and animals we depend on, or even of viruses and bacteria) was rich, but also vague and poorly defined. In many cases, investigators within the Network have been able to track the development of the growing understanding of what our genomes do (and don’t) mean for us. This has been a key academic achievement for the social sciences, but also an important counter-balance and corrective to a form of genomic essentialism that spread through many editorials and popular articles authored by scientists and clinicians.

Researchers within the EGN have completed excellent social research studies but they have also pioneered ways of working collaboratively with scientists and clinicians, whether over public participation in biobanks, about initiatives to barcode life and to chart biodiversity, or ways to develop the epigenetic research agenda to address social and behavioural issues.

Network staff have also worked assiduously to develop relationships with users of genomic insights, ensuring that expertise on the social and cultural dimensions of the life sciences is brought to bear in matters of public policy. Among a wide range of policy partners, the close relationships with the OECD’s Working Party on Biotechnology, with HUGO itself, and with the Human Genetics Commission stand out as highlights. This connection to policy audiences is being continued through into the final EGN conference where the Chair of the House of Commons Select Committee on Science and Technology, Andrew Miller MP, will be participating alongside EGN speakers.

The Centres within the EGN have not restricted their engagements to working with research and regulatory bodies, but have developed relationships with businesses and industry associations. They have also undertaken an enormous amount of imaginative engagement with members of the public, through scientific and literary festivals, science cafés and events covering topics of popular interest, such as vampires and synthetic blood or the use of DNA databases in crime fiction.

In this regard the EGN’s relationship with artists and designers has become a key part of its success: artists and writers

bring new audiences to the work of the EGN’s social scientists and have opened up new channels for communication with clinicians, natural scientists and

practitioners.

The final, critical legacy is that, thanks to the Network’s successes, all three research centres (Cesagen, Egenis and Innogen) will continue to operate as independent research units within host universities after the Network as such wraps up. The Network is also continuing collaboration with other European research centres, with support from the European Science Foundation.

The Forum is also helping to ensure that other forms of legacy come into place, working to guarantee that the Network’s achievements and outputs are readily available on the web and in other formats. Alongside the enduring work of artists in residence, this work will make the achievements of the EGN widely available for years to come.

As the EGN draws to a close, this brings an opportunity to mark the Network’s accomplishments, and to look forward to the influence it will continue to exert in the future. �

Professor Ruth Chadwick, Director of Cesagen Professor John Dupré, Director of EgenisProfessor David Wield, Director of InnogenProfessor Steve Yearley, Director of the Genomics Forum

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Characteristic excellence Highlighting the achievements of the Genomics Network

Since its first appearance in 2004, every edition of the gen has featured an article from each of the Genomics Network’s Centres, setting out the latest developments and outcomes from their respective fields of research.

For this final edition of our newsletter we asked the Directors of Cesagen, Egenis and Innogen to scan our back issues and select a feature article that was exemplary in providing an insight into the work each of their Centres undertakes. We also invited them to justify their selections and indicate what changes might have occurred in the relationship between the life sciences and society since the articles first appeared. Their selections and comments make for an interesting insight in to what has contributed to the success of the Genomics Network during the last decade, and what the future might hold.

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The Cardiff - Lancaster collaboration which constitutes Cesagen operates within a broad range of disciplinary and interdisciplinary perspectives, (particularly identified with Science and Technology Studies (STS), sociology, and bioethics). Successful social studies of science and bioethics collaborations between the two universities preceded Cesagen’s establishment.

The proposal for this Centre drew on this experience and anticipated the benefits for the study of genomics of bringing together diverse social science and humanities researchers to work closely with and study the biosciences and linked sciences and technologies. The geographical and organisational challenges of a two-site Centre have been addressed with resourceful modes of collaboration; and, indeed, such challenges have proved to be relatively insignificant in the context of collaboration across the EGN and the demands of the global reach of Cesagen’s research programme, including work in Latin America, China and India.

Reconfiguring interdisciplinaryresearch

Professor Maureen McNeil, Associate Director, Cesagen

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Characteristic excellence – Reconfiguring interdisciplinary research


Distinctive methodologies: Sociomics and more One distinguishing methodological feature of both phases of Cesagen is the central role of ethnographic fieldwork in examining, through ‘thick description’, the global dynamics of developments associated with genomics and biotechnology.

We have adopted an ethnographic approach in over 20 projects, in sites as varied as clinics, research laboratories, companies, and¸ even jungles, in the UK¸ as well as India and Latin America. Our ethnographic approach has also taken the form of participatory research in collaboration with indigenous peoples in Amazonia and Chile, to shed light on these groups’ perspectives on the commercialisation of traditional knowledge and genetic resources. This work has had significant impact on continuing UN-led discussions on biological diversity and also set the stage for emerging collaborations around our future research agenda on food security.

Post-genomic science is characterised and shaped by the use of the internet, digital databases and computation. Cesagen’s methodological response to these new modes and sites of knowledge production is its Sociomics Core Facility (SCF), which combines IT expertise with social science and humanities research. Research at the SCF both analyses shifts towards data-intensive research and seeks ways to channel freely accessible digital data to make new tools for social, economic and policy analysis of the contemporary life sciences. For example, Paul Oldham and Stephen Hall have made the World Patent Statistical Database (PATSTAT) available online through the SCF Research Desktop - www.researchdesktop.org

Depth of theoretical knowledgeCesagen’s methodological innovations have been complemented by a strong theoretical orientation.

The exploration and development of social theory has been a vital strand in Cesagen’s activities, with researchers seeking both to review critically available frameworks and to craft a robust repertoire of concepts and theories to analyse recent developments in and around the biosciences. This has led to multi-dimensional examinations of some key concepts with broad purchase in the social studies of science and technology, including: imaginaries, promise, and publics. Likewise, critical reflection on the conceptual dimensions of important aspects of genomic developments such as: barcoding in plant taxonomy, biosecurity, biodiversity, personal genomics, forensic genomics, proteomics, bioinformatics, biobanking, synthetic biology, big data, nutrigenomics and food security has underpinned the empirical studies undertaken within Cesagen.

Cesagen has also engaged with critical perspectives that have both challenged and influenced social studies of science and technology in the early 21st century. Hence, for example, a number of projects and publications have drawn on and developed feminist perspectives on the biosciences, biomedicine, and bioethics. In addition, efforts to transcend the human-animal dualism and to explore the significance of posthumanism have guided Cesagen research on a range of projects from the investigation of the treatment of animals in agricultural practices, to the study of the development of in vitro meat. Moreover, Cesagen research has responded to ongoing debates about climate change, sustainability, and social justice. Open experimentation with science fiction, literary and media studies has also enriched some of our investigations.

Substantively Cesagen has been concerned with both agricultural and medical developments in genomics and in biotechnology more broadly. Hence, for example, researchers have looked back at the controversies and consultations over GM crops, at the continuing innovations in reproductive technologies and personalized medicine, and at the looming challenges of ageing.

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Cesagen has been a leading international hub for reflective evaluation of emerging policies and practices of engagement with science and technology. Indeed, Cesagen continues to make a distinctive contribution in enhancing theory and practice in the domain of public engagement with science and technology (PEST).

Our portfolio of work is broad and may be imagined as falling into three discrete, although inter-related, packages: science governance; innovative methodology; and critical sociologies of PEST. Our disciplinary orientation in these initiatives is similarly diverse, spanning STS, science communication, cultural and media studies, and the sociology of education.

Cesagen has been proactive in leading debate about and evaluating programmes for PEST in the UK and other contexts. This is evidenced, for example, in our work with BIS / Sciencewise; the ESRC series on Critical Public Engagement; and the Beacons for Public Engagement. Cesagen’s Director, Ruth Chadwick, is a Beacon for Wales’ appointed ‘Champion for Public Engagement’. We have developed a Programme for Impact and Public Engagement (PIER) which focuses on:

facilitating individual and institutional strategies in understanding and implementing the ‘impact’ values of scientific research;

expanding ideas of knowledge exchange and translation between scientific experts and user communities (policy / practitioner / public);

ameliorating science communication strategies that encompass Web 2.0, experiential pedagogies in science learning, and upstream dialogues.

Our research in PEST has and continues to occur in a range of settings familiar and less indigenous to science / scientists and includes a range of ‘public’ spaces: public museums; art galleries; science centres; a science Academy and with partners as diverse as Tate Modern and the NHS. In conjunction with PIER we have developed a series of creative and participatory engagement models that we continue to use with a range of public communities.

These include sciSCREEN (a science / cinema dialogue event); a philosophy café (based on the Café Scientifique model of science dialogue); a cross-disciplinary engagement research group for academics; an extra curricula club for female learners in STEM; and art / genomic workshops with young offenders.

Cesagen has proved to be a vibrant Centre with distinctive and evolving features and strengths: its achievements and promise far exceeding the expectations at its launch. �

This article was constructed with the assistance of Ruth Chadwick, Adam Hedgecoe, Ruth McNally, Richard Tutton and Richard Watermeyer.

Public engagement with science and technology

For further information on Cesagen, please visit: www.genomicsnetwork.ac.uk/cesagen

To visit the Sociomics Core Facility, please visit: sociomics.lancs.ac.uk/desktop2

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Professor Ruth Chadwick, Director, Cesagen

Director’s CommentsFlourishing multidisciplinary working: Responding to a changing bioscience and societal landscape

Cesagen’s article by Maureen McNeil demonstrates the ways in which the ESRC investment in Cesagen has allowed for the flourishing of multidisciplinary working, including theoretical work in both STS and bioethics and the intersections between the two. What the article did not have space to address was the how the landscape of the biomedical and natural sciences has changed since Cesagen’s inception, and the interrelation between that and social and ethical reflection.

Through the life of the investment, ‘genomics’ has increasingly come to be understood by Cesagen researchers as a marker for the life sciences broadly conceived, rather than narrowly in terms of genome mapping and sequencing. Although at the present time developments in whole genome sequencing have come into focus, Cesagen, along with other nodes in the Network, has addressed other developments, such as stem cell science.

As the ten year programme comes to an end the rapidly developing science of epigenetics and epigenomics arguably has the potential not only to affect the ways in which the advances of genomics can be implemented to improve health, but also to require changes in the way we think about the principles underlying public health advice. For example, in light of the purported obesity epidemic, public health is currently focused almost entirely on diet and lifestyle (with some attention to advertising practices). How might epigenetics and epigenomics be factored into public health, e.g. as regards maternal nutrition? Secondly, much attention continues to be paid to the possibilities of personalised

medicine, but we know that there are gaps in knowledge about the factors involved in drug response which may allow for the further development of pharmaco-epigenomics. The possible effects are far reaching – in the context of on-going interest in the social and biological aspects of ageing, in so far as environmental effects could lead to a challenged epigenome in later life, how might this affect work on ageing and life expectancy? Ageing is one area in which there is potential for Cesagen’s social and ethical work on dignified care to become more integrated with work on genetic and epigenetic factors in the diseases of ageing and ageing itself, as science and ethics co-evolve.

When we turn to conceptual issues such as those identified in McNeil’s article, epigenetics and epigenomics will also surely require renewed attention to the concept of responsibility – both causal and moral. In so far as epigenomic science produces more information about causal responsibility, this needs to be taken up in social and ethical discussions, both normatively and in relation to the feasibility of implementation in not only public health but also in the clinical setting. In the light of the relationship between the epigenome and environmental factors, new ways of thinking may be required at the interface between biomedical and environmental ethics. Although according to some accounts these two fields were closely connected when bioethics emerged, they have grown apart. New theoretical insights may be achieved by bringing them back together, especially as discussions become increasingly global in nature. �

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Professor Ruth Chadwick, Director, Cesagen

Cesagen’s article by Maureen McNeil demonstrates the ways in which the ESRC investment in Cesagen has allowed for theflourishing of multidisciplinary working, including theoretical work in both STS and bioethics and the intersections betweenthe two. What the article did not have space to address was the how the landscape of the biomedical and natural sciences has changed since Cesagen’s inception, and the interrelation between that and social and ethical reflection.

Through the life of the investment, ‘genomics’ has increasingly come to be understood by Cesagen researchers as a marker for the life sciences broadly conceived, rather than narrowlyin terms of genome mapping and sequencing. Although at the present time developments in whole genome sequencing have come into focus, Cesagen, along with other nodes in the Network, has addressed other developments, such as stem cell science.

As the ten year programme comes to an end the rapidlydeveloping science of epigenetics and epigenomics arguably has the potential not only to affect the ways in which the advances of genomics can be implemented to improve health, but also to require changes in the way we think aboutthe principles underlying public health advice. For example, in light of the purported obesity epidemic, public health is currently focused almost entirely on diet and lifestyle (with some attention to advertising practices). How mightepigenetics and epigenomics be factored into public health,e.g. as regards maternal nutrition? Secondly, much attention continues to be paid to the possibilities of personalised

medicine, but we know that there are gaps in knowledge about the factors involved in drug response which may allow for the further development of pharmaco-epigenomics. The possible effects are far reaching – in the context of on-going interest in the social and biological aspects of ageing, inso far as environmental effects could lead to a challenged epigenome in later life, how might this affect work on ageingand life expectancy? Ageing is one area in which there is potential for Cesagen’s social and ethical work on dignified care to become more integrated with work on genetic and epigenetic factors in the diseases of ageing and ageing itself, as science and ethics co-evolve.

When we turn to conceptual issues such as those identified in McNeil’s article, epigenetics and epigenomics will also surely require renewed attention to the concept of responsibility – both causal and moral. In so far as epigenomic science produces more information about causal responsibility, this needs to be taken up in social and ethical discussions, both normatively and in relation to the feasibility of implementation in not only public health but also in the clinical setting. In the light of the relationship between the epigenome and environmental factors, new ways of thinking may be requiredat the interface between biomedical and environmental ethics. Although according to some accounts these two fields were closely connected when bioethics emerged, they have grown apart. New theoretical insights may be achieved by bringing them back together, especially as discussions become increasingly global in nature. �


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Christine Hauskeller calls for a decoupling of the identity and the genome of a person. The idea of ‘genetic identity’ is a commonplace in arguments about human dignity and the governance of human cloning. But it is inappropriate. It is biologically incorrect and incompatible with common transplantation medicine.

After four years of intensive debate, in 2005 the United Nations tabled a resolution to ban human cloning. The presumed threat human cloning poses is that it undermines human dignity and the cloned person’s identity. The UN Resolution is only one example of how the uniqueness of each individual’s genome has become a tenet of legal practice and an important element of our understandings of humanity. ‘Genetic identity’ is thought to define individuality and personhood. However, this understanding of identity as derived from the uniqueness of a body cell and its genome is contentious and problematic.

Genomes and identity in legislationSeveral international declarations reflect the idea that a human right to a genomic identity can safeguard human dignity. The EU Convention on Human Rights and Biomedicine (1996), the EU Resolution on Human Cloning, and the UNESCO Declaration on the Human Genome and Human Rights (both 1997) all express the belief that human dignity and personal ‘genetic identity’ are related and that in order to safeguard human dignity the naturalness and uniqueness of people’s genomes has to be protected. The EU Cloning Resolution refers to a right to genomic identity as its main argument against human cloning. Article 1 states: ‘each individual has a right to his or her own genetic identity and that human cloning is, and must continue to be, prohibited’.

The Human Genome Project aimed to deliver knowledge about humankind on various levels, in particular what it is to be human (species identity), and what makes us unique as persons (individual identity). The Human Genome Diversity Project was geared towards enlightening the middle ground between species and individuals. The Personal Genome Project now aims to deliver uniqueness for all. So it seems the genome has become the carrier of our cultural understanding of what it is to be human.

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Christine Hauskeller, Egenis


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However, when analysing genomes and testing for markers that allow identification of individuals or their relatedness, tests are used which do not compare genes but the non-coding elements of the genome. This is why the phrase ‘genetic identity’ in legal documents is inadequate. The genome is the reference when we test for paternity, identify criminals, or when we want to determine the specificity of groups. Hence it is ‘genomic identity’ legal texts rely on to secure human dignity and courts refer to when forensic genomic evidence is obtained.

Human bodies are genomic patchworksHowever, the grounding assumption that every individual (except twins) has her unique genome which is present and the same in all her body cells is fiction. Basic social and biological facts as well as the successes of transplantation medicine undermine the equation of human identity with genomic identity.

One example is healthy people, who carry a genomic structure in some of their cells that would cause Down’s Syndrome if it occurred in other or all cells of their body. The development of patchwork patterns in genomes in a developed body can occur naturally through mistakes in cell division in early stages of embryonic development.

In addition to these natural patchworks, transplantation medicine increasingly produces genomic patchwork bodies. After bone marrow transplantation, the patient’s blood system carries the genomic and immunological specificities of the donor. The practice of treating leukaemia with donated bone marrow cells actually takes what is called the ‘chimerism factor’ (the fraction of blood cells from the transplant in the blood of the recipient) as its measure of therapeutic success. After any organ or tissue transplantation cells from the transplant spread through the recipient’s body and quite a few of her ‘own’ cells move into the transplanted organ. Cells with different genomes work together in the body and its organs to maintain physiological function.

Personal identity does not require genomic identityThe sameness of the genomes of identical twins does not lead anybody to claim they are not unique as people. The logic behind ‘genetic identity’ in regulation is explicable only in light of the recent history of attempts to govern abortion and

reproductive medicine. Nobody could seriously believe that a person’s genome is solely or most importantly what makes her who she is. Memories, developed capacities, and a unique life history, relationships with others, family and social upbringing are what we commonly refer to when we try to capture what is unique about us, what we identify as and with. The cells in the body of a person are not unique nor do they necessarily carry the same genome. Genomes cannot and hence ought not to be functionalised as the guarantors of individual uniqueness.

Personal identity and human dignity need protectionConsidering the complex social grounds of personal identity, the legislative calls for a biological, cellular basis of personal uniqueness offend the dignity each human has. A right to ‘genomic identity’ fails to protect its fosterling human dignity. It seems not only inappropriate but potentially damaging to conflate the important moral notion of human dignity with the notion of personal identity. Dignity is a crucial moral concept indispensable for the development and strength of democratic, equality-oriented society, but it may well be grounded in people’s ability to change themselves rather than in them remaining the same – being and becoming together shape the individual and make it unique. While human dignity should be unassailable, markers of identity – the genomic or the social kind – tend to vary during the course of a life. The challenge is to develop understandings of human dignity that are coherent and do not contradict biological facts and the benefits well-governed biomedicine can provide. �

ReferencesThis research has been presented

in more detail in: C. Hauskeller:

‘Genes, Genomes and

Identity. Projections on

Matter’, New Genetics and

Society, 23: 3: 2004, pp.

285-299 and Science and

Public Affairs, March 2005.

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Seven years ago this article by Christine Hauskeller presented compelling reasons for resisting the growing tendency to ground people’s deepest identity and individuality in their genomes. Sadly, this is a message that still needs to be repeated today.

All too often we hear that what are taken to be the most fundamental features of a person, a sports team, or even a country, are ‘in their DNA’. Yet as Christine tells us, features of an individual derive from a far more complex set of interactions between biology and the environment, to the extent that scholars are increasingly urging that we altogether abandon the traditional nature/nurture distinction. And the danger that fetishisation of DNA, part of what Barry Barnes and I (in our book Genomes and What to Make of Them) have called ‘Astrological Genetics’, will encourage biologically determinist conceptions of human kinds such as race and gender, remains pressing.

Christine’s article reminded us that in fact there is no genome unique to and omnipresent in each individual: identical twins share much the same genome, and within an individual a mosaic of different genomes cooperate to maintain life processes. Two other areas of scientific research that have progressed rapidly in the years since those remarks strongly reinforce this idea.

First, and increasingly prominently, has been the growth of work in epigenetics. Epigenetics tells us something that has been in the background of biological thinking at least since C. H. Waddington’s work in the mid-twentieth century, that genomes are dynamic entities that respond constantly and often adaptively to their environments, not merely cellular but even social. Moreover the very different kinds of cells that form as a complex organism – such as a human – are in part different because of epigenetic changes, that is to say chemical modifications to their genomes.

So when we direct our attention from the very partial description of the genome in terms of the familiar four letter (ACTG) sequence, to the full complexity of the genome as a dynamic, chemically changeable biological object, the idea of a genome common to every cell in the body becomes even more problematic.

Second, we are becoming rapidly more aware of the extent to which an organism such as a human is not merely a lineage of familiarly ‘human’ cells, but a symbiotic whole, including trillions of microbial cells and even non-cellular entities such as viruses and

plasmids. In fact, 90 per cent of the cells and over 98 per cent of the genes in the human body are microbial.

We are just beginning to understand the multiple ways in which these microbial partners affect our development, our

health, and even perhaps our cognition.

These scientific developments even more strongly confirm the view of the human body as a massively complex collaboration of very diverse entities, and a system able to respond in multiple and profound ways to features of the environment at many organisational levels. The attempt to reduce the human species, particular categories of humans, or human individuals, to their DNA sequence is even more obviously futile and ungrounded than it was when Christine’s original article appeared seven years ago. �

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Professor John Dupré, Director, Egenis

Director’s CommentsIs my genome I? – seven years on

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As 2006 gathers speed, it is increasingly clear that science and technology (S&T) has an important contribution to make to development because of its importance in addressing problems in health, economic growth, energy and agriculture.

The United Nations Millennium Commission highlights the importance of unlocking ‘the potential of innovation and technology to accelerate economic growth’ (Juma et al, 2005). Meanwhile, the Commission for Africa report underlines the importance of ‘specific action for strengthening science, engineering and technology capacity is an imperative for Africa’ (Commission for Africa, 2005). The disappointments of development suggest that new kinds of ‘specific action’ will be required to unlock the potential of science and technology to shape Africa’s future.

There are three reasons for re-thinking the way science and technology is researched and developed in Africa. First, current institutional arrangements have not for the most part

developed the kind of technologies needed to drive African development. For example, there are a variety of disconnects between labs, test plots and farmers including market failures, a lack of communication and a lack of sustainable investment in R&D. Second, the way in which scientific research is undertaken has changed - new technologies and research methods have emerged, new areas of interest have arisen, and new disciplines have developed. The enormous complexity and investment required to develop vaccines for the three main communicative diseases in Africa, HIV-AIDS, malaria and tuberculosis, illustrates this. Third, donor agencies and African governments are re-prioritising science and technology as fundamental in making development work and this has resulted in massive commitments to S&T development in Africa. The UK Department for International Development (DFID) has committed an initial £100 million in 2005/06 for development research, the Canadian government has promised to spend at least five per cent of its R&D budget on developing country issues, and the International AIDS Vaccine Initiative is currently investing over $100 million on six candidate vaccine trials in 11 countries (IAVI, 2005).

Framing ‘excellence’, institutions and innovation in Africa

Joanna Chataway, James Smith and David Wield, Innogen


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The intersection of these three dynamics not only presupposes new ways of doing things, it also places new pressures on existing institutional arrangements and systems of innovation. It is within this context that the notion of ‘excellence’ has gained currency in development policy, funding and programming at a range of levels (cf. NEPAD Science and Technology Secretariat, 2005; DFID and UK Select Committee on Science and Technology, 2004). For example, the New Partnership for Africa’s Development (NEPAD) see centres of excellence as the institutional core of their vision of the role science and technology will play in Africa’s development.

Traditional methods of evaluating research excellence have revolved around peer review of proposals and journal articles. However, while peer review is an important and necessary component of evaluation, it may not be sufficient. It may be important to consider, for example, whether this method is responsive to the need to promote development, sensitive to local context, changes in the way research organisations are structured and is successful in creating incentives to undertake research with the possibility of solving development problems.

Innogen research at the Open University and at Edinburgh is beginning to interrogate the dynamics that shape ‘excellence’, focusing in particular on underpinning issues such as institutional arrangements, governance and funding mechanisms.

Our work with the NEPAD and IDRC-inspired Biosciences for East and Central Africa (BECA) centre of bioscientific excellence has underlined the difficulty in shifting from a traditional, narrow focus on excellence in research to a focus on research as a lever to meet development needs. Forcing a change in research focus of this nature involves realigning and recreating a range of multidimensional networks; the goals and priorities of donors; formal and informal institutional and inter-institutional governance; the values of scientists and their working relationships; relationships between R&D institutions, NGOs and local communities; and the relationship between the public and private sectors. Driving these changes involves pushing against institutional inertia, a poverty of resources and conflicting beliefs, needs and politics.

One of the ways in which we have seen these realignments occur has been through the influence of project-led change. The DFID-funded East Coast Fever project has led scientists at the Kenyan-based International Livestock Research Institute (ILRI) to consider the implications of integrating their lab work with the eventual development and distribution of a vaccine and by extension extending working relationships beyond the lab into the private sector and into the community.

By focusing their funding on promising research that had the potential to make the biggest impact on livelihoods in east Africa DFID have achieved two things, first DFID broadened their own methods of measuring research excellence, and second they refocused ILRI scientists on how they conceived their own research and how it could achieve excellence in multiple ways (Smith, 2005). We believe that project-led funding of this sort is one way in which notions of excellence can be fashioned to encompass issues of poverty and development.

Earlier this year, Maureen O’Neil, Director of the Canadian International Development Research Centre stated: ‘now is the time to consider how we define excellence and innovation and how we will measure research results …’. Our research is not so much indicating how excellence ought to be defined but is rather indicating ways in which notions of excellence can be shaped and re-shaped. In the African context of resource poor R&D institutions, fractured R&D networks and disconnected systems of innovation identifying ways to affect changes in ‘excellence’ practice will play an important role in shaping developmental agendas of research excellence. �

ReferencesCommission for Africa (2005) Our Common Interest:

Report of the Commission

for Africa, Earthscan, London.

DFID (2003) Research for Poverty

Reduction, DFID Research Policy Paper,

London.

IAVI (2005) Fact Sheet: the

International Aids Vaccine Initiative.

www.iavi.org

Juma, C. and Yee-Cheong, L. (2005)

Task Force 10 on Science, Technology

and Innovation, Report of the Millennium

Project, United Nations.

Mugabe, J. (2005) Centres of Excellence in

Science and Technology for Africa’s Sustainable

Development’ paper prepared for the African

Ministerial Conference on Science and Technology for

Development

Smith, J. (2005) Context-bound knowledge production,

capacity building and new product networks, Journal

of International Development, 17(5), 647-659.

“...the potential of innovation and technology to accelerate economic growth”The United Nations Millennium Commission

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cellence’ practice will play an important role in opmental agendas of research excellence. �

rica (2005) Our Common Interest:

mission

an, London.

arch for Poverty

esearch Policy Paper,

heet: the

Vaccine Initiative.

Cheong, L. (2005)

Science, Technology

port of the Millennium

tions.

Centres of Excellence in

nology for Africa’s Sustainable

er prepared for the African

ence on Science and Technology for

ontext-bound knowledge production,

and new product networks, Journal

velopment, 17(5), 647-659.

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Professor David Wield, Director, Innogen

Continuing excellence in institutions and innovation around the world

Our article, Framing ‘excellence’, Institutions and innovation in Africa from the gen in 2006, gives a sense of Innogen’s vision to build excellent research whilst, at the same time, going beyond conventional approaches to establish international institutional alliances that foster development around the world.

One of Innogen’s main research strengths is in the area of life sciences and development. We bring together researchers from two of Europe’s main international development centres – Development Policy and Practice at the Open University and the Centre of African Studies at the University of Edinburgh – and an enormous group of collaborators around the world.

The resulting research has, since Innogen began in 2002, resulted in 8 books; over 100 refereed articles; and 15 PhDs from more than 20 projects, funded with over £4m provided by the ESRC, BBSRC, European Research Council, the EU, DfID, CIDA, SIDA, Wellcome, the Gates Foundation, and the African Union.

We have a lot to celebrate and also an increasing amount still to do! The hallmark of Innogen’s work has been world class research with a global impact. Not just research on development problems in food, health, energy and environment, but research with developing country researchers, in developing countries, and on issues that affect the largest populations.

The chosen article encapsulates these values. It reported on a project done for UK DfID and the Canadian government on capacity building for excellence in Africa. This work led to further intense, tight deadline-based research for the African Union and the New Economic Partnership for African Development (NEPAD) on mechanisms to build excellence in health innovation, and most recently, to developing an African Innovation Index with the United Nations Economic Commission for Africa.

Building on this early work from 2002-2006, we continue our endeavour to ‘practice what we preach’. In the first instance, whilst we conduct excellent research and publish articles in high profile journals, our work should also directly promote development where possible. In line with this, Innogen researchers have undertaken policy and consultancy work. And second, we should ‘interrogate the dynamics that shape “excellence”, focusing in particular on underpinning issues like institutional arrangements, governance and funding mechanisms’. Therefore, as we aim to produce excellent research, we do so with the awareness that excellence itself

is the product of a set of conditions and can have different characteristics across contexts.

Some of our many successes in this area include:

our research on public-private partnerships, such as IAVI, which has built understanding of how product development partnerships have been so successful at promoting the development of new biology for neglected diseases and that linked us to the global health partnership database, which we now coordinate;

the PISCES programme on biofuels, which is a three continent capacity building initiative;

the evaluation of a large Wellcome Trust initiative to build capacity in health research in Africa; and

research into the interactions between innovation and industrial policy that are needed to promote health innovation in Africa and Asia.

We are committed to continuing and expanding these activities in the next five year programme of the Innogen Institute. �

Director’s Comments

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Project Funder

Product development partnerships in global health ESRC Core Grant

Public-private partnerships in food and agriculture ESRC Core Grant

Public-private partnerships in food and agriculture European Research Council

Policy Innovation Systems for Clean Energy Security (PISCES)

DfID

Evaluation of the Wellcome Trust African Institutions Initiative – Research capacity building in Africa: networks, institutions and local ownership

Wellcome Trust

Ethics, payments and maternal survival in Tanzania Wellcome Trust

Innovative spending: making global health innovation effective ESRC

ESRC

Industrial productivity, health sector performance and policy synergy for inclusive growth

ESRC-DfID

Selected Innogen Development Projects

We are committed to continuing and expanding these activities in the next five year programme of the Innogen Institute.

Characteristic excellence – Framing ‘excellence’, institutions and innovation in Africa

ellcome Trust

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Engagingly innovative– a decade of the Genomics Network connecting with the public

Chris Berry, Communications Officer, Genomics Forum

When the human genome was initially mapped, the project was estimated to have cost $3billion for one genomic sequence. Yet now that it may soon be possible to map someone’s genome for just over £500, will this make ‘personalised medicine’ a reality for many?

A new generation of biofuels is touted as a major breakthrough in tackling climate change, yet is proper consideration given to the ethical issues relating to their production?

As scientists now have the ability to create artificial life in the laboratory, what might be the benefits and risks of ‘playing God’?

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Undoubtedly, the rapid advances in life sciences witnessed during the last decade have major implications for our society and economy, raising the sort of questions illustrated earlier in this article. The ESRC Genomics Network (EGN) has become internationally renowned for seeking answers to such questions, through researching the impacts stemming from the rapid global development of biosciences. Yet this research represents only one half of the success story of the Genomics Network. Of equal importance is the way in which diverse stakeholders, including the public and policymakers, have been involved in – and helped to shape – the debate around the evolving promise of the life sciences, through the use of novel engagement and communication approaches deployed across the Network.

The art of engagementArt, literature, film, drama, poetry – these are all tools used by the Genomics Network to reflect upon, and attempt to foster understanding of, society’s relationship with bio-scientific developments. Given the emphasis in the work of the Genomics Forum on using innovative approaches and channels to promote awareness of social research into the life sciences, it is perhaps unsurprising that this Centre has been at the forefront of using artistic engagement to reach out beyond traditional academic audiences. The establishment of a series of artistic residencies and engagements – which have featured visual artists, writers, designers, photographers, poets and filmmakers (see below) – has allowed the Forum to interact with stakeholders in stimulating and often unconventional ways, thereby broadening the debate on the impact of bioscience upon all our lives. Packaged as the Creative Space initiative, the time spent with the Forum by its Artists-in-Residence and visiting artists has resulted in diverse and stimulating outputs. These range from a dedicated website featuring genomics-themed short works of fiction, through to projected visual installations examining issues around heredity and cloning. As the Genomics Network in its current form draws to a close, Creative Space will also soon deliver films and a play exploring the complex relationships between genomics, individuals and society.

Other Centres within the Genomics Network have been equally adept at pursuing an artistic approach to engagement. Liam Harrison was Artist-in-Residence with Cesagen for four years, producing genomics-inspired works that were exhibited at various locations, including The Royal Society. Cesagen has also developed Cardiff sciSCREEN, which uses special screenings of new release films alongside contributions from local academic experts to discuss

contemporary developments in science. Egenis also has a long established relationship with its Artist-in-Residence, Deborah Robinson, who has produced art that includes mixed-media work featuring illustrations from Darwin’s Origin of Species superimposed on laboratory analyses of DNA, as well as curating the Egenis contributions to the Festival of Social Science (see below). Innogen has taken a somewhat different approach to the integration of art and design with the consideration of bioscience, through the Synthetic Aesthetics project. This initiative brings together scientists and engineers working in synthetic biology with artists and designers working in the creative industries to produce potentially new forms of engineering, new schools of art, and new approaches to societal engagement with synthetic biology.

A festival of collaboration The Genomics Network has also been innovative in the way it has engaged the public in initiatives that allow for discussion and debate on the influence of biotechnology upon society. Moving beyond traditional – but nonetheless important – lecture series, Network Centres have frequently contributed to literary, science and political festivals in order to reach new audiences that might not traditionally be drawn to genomics-related issues.

During the last decade, each Centre has produced stimulating events as part of the annual ESRC Festival of Social Science that provide an inventive take on bioscience-related issues. Subjects considered range from the socio-economic benefits of a revolution in biotechnology, through to the social consequences of personalised medicine, and even the implications artificial blood might have for fictional vampires!

Linking in with creative outreach these events have also frequently combined science with artistic input, as has been the case for the Egenis initiative Art in the stocks, science in the dock, which brings together the public, artists, scientists and social scientists to share practice, discuss the way science is represented in art, and consider the ways in which art draws on science for inspiration.

Significant public engagement and impact has also been achieved through the involvement of Centres in major, externally organised initiatives. This is exemplified through the Genomics Forum involvement in the Edinburgh International Book Festival (EIBF) – the world’s largest and most prestigious literary festival. Since 2006, the Forum has been a major supporter of EIBF, working with it to programme events that examine a breadth of issues around the interface between

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A session dedicated to the innovative approach to the engagement pioneered by the Genomics Network will feature in the EGN 13 Conference http://www.genomicsnetwork.ac.uk/forum/conf2013

Full details on the Genomics Forums Creative Space are available at http://www.genomicsnetwork.ac.uk/forum/creativespace/

the social and life sciences. These feature authors, scientists, and social scientists in examining the social consequences of developments in areas as diverse as epigenetics and bio-hacking. Not only have these festival events frequently attracted sell-out audiences, but the Forum has maximised their reach and impact through the use of social media, by blogging on both its own events and others with a life science/social science locus, and by engaging event panellists and authors in debate via Twitter.

Full of ‘bright ideas’Whilst engaging outwardly with a broad audience of stakeholders has been an important element of the work of the Genomics Network, it has also used visiting fellowship schemes to attract and involve in its work individuals and representatives of organisations with varying backgrounds. This approach is demonstrated by the Genomics Forum's Bright Ideas programme, which enables participants to work with the Forum for a period ranging between a few days to a few months to progress a programme of work aligned to their own interests in the social dimensions of genomics, genetics and life sciences.

Since 2005 the Forum has hosted 95 Bright Ideas fellows, originating from all continents, bar Antarctica. These have come from a broad spectrum of occupational backgrounds, encompassing the academic, voluntary, government, policy, health, legal, and journalistic sectors. Bright Ideas fellows have, by way of employment, represented or been associated with a diverse cross-section of organisations that have a broad interest in the socio-economic influence of the life sciences, including the Organisation for Economic Co-operation and Development (OECD), the UK Cabinet Office, NASA and the South African Shadow Cabinet. Invariably, each fellowship has resulted in an output – such as new data, a publication or event – that is of benefit not only to the research fellow (and potentially the organisation they represent) but can often be used to further the wider engagement undertaken by the Genomics Network.

There can be little doubt that during the last decade, as a result of its innovative approach to public outreach, the Genomics Network has been at the cutting edge of enhancing understanding of, and in driving engagement with, the socio-economic impacts of emerging areas of the life sciences. It is hoped that this innovative approach to engagement will have a life beyond the Genomics Network and continue to influence the work of social scientists in years to come. �

Genomics Forum Resident and Visiting Artists

Specialisation

Alistair Gentry Visual artist

Ken MacLeod Writer

Alexandra Daisy Ginsberg Designer

Pippa Goldschmidt Writer

James King Designer

Peter Arnott Playwright

Georgina Wood Photographer

Cameron Duguid Filmmaker

Lindsay Goodall Filmmaker

Samantha Walton Poet

Ann Lingard Writer

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ESRC Genomics Network Conference 2013Genomes and societies: Global challenges around life sciences

Tuesday 30 April and Wednesday 1 May 2013One Great George Street, London SW1P 3AAFull programme available at: www.genomicsnetwork.ac.uk/forum/conf2013

For the last decade the ESRC Genomics Network has been dedicated to examining the social and economic impacts resulting from the development and use of life science technologies. The Network has also undertaken a ground-breaking programme of engagement, stimulating debate amongst policy makers, scientists and the public on both the opportunities and challenges presented by emerging developments within biotechnology.

In its final conference, the Genomics Network will evaluate how the debate around advances in the life sciences has developed during the last decade, and the way stakeholders have been engaged in this. Drawing upon both UK and international examples, the conference will analyse the successful facilitation of links between life sciences, policy development and society, and examine how these can be applied to the socio-economic challenges likely to arise from emerging innovations in biotechnology.

Sessions Include:

Professor Roger Pielke Jr on The many roles of scientific advice for governance and policyWhat’s special about scientific advice, governance and policy-making in the life sciences?Innovative strategies for engagement through the arts The past, present and future of Responsible InnovationThe ‘people legacy’ of the Genomics NetworkThe EGN Impact agenda – how the Genomics Network has influenced policy, debate and understandingGenomics and societies: Continuing engagement beyond the Genomics Network

To register for this free conference, visit http://genomesandsocieties.eventbrite.co.uk

Across its Centres the EGN has a unique research profile in the social study of science, medicine, biotechnology and the philosophy of biology, with a particular focus on emerging areas of genetic, genomic and post-genomic science. This outstanding research community has fostered some exceptional postgraduate research, creating lively communities for PhD students at each of the EGN’s Centres across five universities.

Undertaking a PhD at an EGN Centre enabled each student to become completely integrated into the research community, with day-to-day contact with staff and other students. Academic staff and postgraduate research students regularly organised and engaged in workshops, seminars, reading groups and briefings, creating opportunities for informal contact which complemented formal supervised sessions.

Students were encouraged to write and publish papers during the course of their studies, often leading to collaborative projects and articles.

It is no surprise, then, that graduates of the PhD programmes across the EGN in many cases have gone on to research or teaching positions in high-profile institutions around the globe. Here, we examine the experiences of some of the EGN's recently-minted doctors and post-doctoral researchers, and their blossoming careers.

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John Dupré, Director, Egenis

Nurturing expertise in social study of science– The Genomics Network’s ‘people legacy’

“Students were encouraged to write and publish”

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Nurturing expertise in social study of science – The Genomics Network’s ‘people legacy’

Dr Ruth McNallyRuth joined Cesagen from Brunel University in 2003 as a Senior Research Associate in Cardiff where she was promoted to Research Fellow in 2005. Whilst at Cardiff she supervised Dr Andrew Bartlett and Dr Jamie Lewis on their

PhD studentships. She moved to Cesagen at Lancaster in 2007 where she was promoted to Senior Research Fellow in 2009. In 2009, she also took over the organisation of Cesagen’s Public Lecture series in Lancaster, moved it to the Town Hall, and secured as speakers Professor Tim Lang (2010), Professor Sir Alec Jeffreys FRS (2011), and Professor Sir John Sulston FRS Nobel Laureate (2012). With Mike Lynch, Simon Coles and Kathleen Jordan, she published the award winning book Truth Machine: The Contentious History of DNA Fingerprinting, winner of the 2011 Distinguished Publication Award by the Ethnomethodology and Conversation Analysis Section of the American Sociological Association, and also winner of Outstanding Academic Title Awards, Choice Magazine.

She gave an invited presentation to the Human Genetics Commission, served on the Human Proteome Organisation’s Data Standards Working Group, and serves on the Scientific Advisory Board of the BBSRC Genome Analysis Centre (TGAC). She made successful proposals for external funding from the ESRC Sustainable Technologies programme (2004-2006); e-Science Institute (2011); ESRC Strategic Directorate for Digital Social Research (2012); EPSRC Cross-Disciplinary Interface Programme (2011-2014); and the ESRC cross-investment funding scheme (2013-2014). In September 2012, she took up a Principal Lectureship in Innovation and Technology Management at Anglia Ruskin University, Cambridge where she is continuing to develop PROTEE for use with innovation projects. Ruth continues to be employed part-time at Lancaster University where she works on the EPSRC project Catalyst: Citizen-led innovation – tools for change; and she also continues to collaborate with former Cesagen colleague Dr Adrian Mackenzie on the ESRC project: Socialising 'big data': Identifying the risks and vulnerabilities of data-objects.

Dr Neil StephensI started at ESRC Cesagen to do ethnographic work at the UK Stem Cell Bank, a then-new institution central to the regulation and circulation of human embryonic stem cell lines. It was fascinating to see the inside workings of an

organisation grappling with the newly emergent social and technical aspects of a high profile biomedical technology. It sparked my interest in the practical interpretation of regulation and the role of standardisation in tissue storage. I got to take these themes forward in my second study of the cancer biobank onCore UK, although not in the ways I anticipated. Shortly after starting the project it was announced that onCore UK would be ceasing biobanking activity, so it quickly became a case-study of biobank closure as opposed to biobank operation (something I believe will increasingly become a key theme as more biobanks face harder times). Both projects helped me develop a decent publication record, but neither delivered the media and public engagement interest of my

next project. In 2008 I decided it would be interesting to look at stem cell use in nonmedical contexts, and started to focus on scientists making in-vitro meat. At the time this was almost unheard of and seemed very marginal, which is what attracted me: how is stem cell science different in non-mainstream contexts? Since then I’ve interviewed almost everyone making in-vitro meat in the world, and again developed numerous publications. But the unusual thing is the extent to which I now find myself being interviewed – by journalists – about it. It is no longer unusual for me to be in my office and receive a contact from a blogger, radio station or TV researcher from the other side of the world. It’s fun, and a great route to research impact. But I have not abandoned biomedical issues. Currently I’m working with bioinformaticians developing software to document stem cell culturing techniques, and have joined a committee establishing a new rare gynaecological cancer registry. Cesagen has offered me a lot of opportunities in the last eight years, and I hope I have done my bit in giving something back.

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Dr Pierre-Olivier MéthotPierre-Olivier started his PhD project in philosophy at Egenis at the University of Exeter in October 2007, having completed an MA and a BA, also in philosophy, at

the Université de Montréal (Québec, Canada). His MA thesis examined the problem of individuality in biology. During his first year at Egenis he put together a cotutelle between the University of Exeter and the Institut d’histoire et de philosophie des sciences et des techniques (IHPST) at the Université Paris 1 (Panthéon-Sorbonne). Between 2008 and 2011, he spent 10 months at the IHPST as a visiting doctoral student and obtained a joint PhD from Exeter University and Paris 1 in February 2012. Pierre-Olivier’s PhD thesis was entitled Historical Epistemology of the Concept of Virulence: Molecular, Ecological, and Evolutionary Perspectives on Emerging Infectious Diseases in the 19th and 20th Century. His research was funded by the Social Sciences and Humanities Research Council of Canada (SSHRC) and by Egenis.

Just before handing in his dissertation, Pierre-Olivier had four months at the Brocher Foundation in Geneva, Switzerland, as a visiting researcher. During that time he presented a seminar at the World Health Organization in Geneva. His talk, Health and disease in the light of evolution - or WHO needs Darwin?,

was part of a series of seminars on Ethics and Health jointly organised by the organisation’s Department of Ethics, Equity, Trade and Human Rights and the Brocher Foundation.

Prior to graduation, Dr Méthot was awarded a two-year post-doctoral scholarship from the Fonds de Recherche Société et Culture (Québec), and took up a post-doctoral position at the Institut d'histoire de la médecine et de la santé at the Université de Genève (Switzerland) in January 2012 where he works on the history and epistemology of disease ecology and evolution. As part of his on-going research, he recently gave an invited seminar at the National Institute of Health (NIH) in Washington (D.C.). Dr. Méthot is now about to take up a Post at Laval University, in Québec City, as Assistant professor in philosophy of science.

‘I remember how pleased I was the first time I walked into Egenis, as I had no idea that the Centre was located in such a beautiful venue,’ Pierre-Olivier said. ‘I think very fondly of the countless hours spent reading, thinking, discussing, and writing in the art-filled building. This unique research Centre provided not only the material and intellectual resources necessary to complete a doctoral project but was also home to a lively community of researchers to whom I owe an enormous amount. I strongly benefited from the encouragement of my supervisors and my friends, and from the stimulating projects at Egenis that make it such an exciting academic environment to be in.’

Dr Jean HarringtonAn undergraduate degree in Sociology from the University of Exeter and a working background within the pharmaceutical industry and private education

fuelled Jean’s interest in ethical and social attitudes and the conceptualisation of innovative research in the field of science.

Jean’s thesis for her MSc in Genomics in Society, undertaken at Egenis, centred on an exploration of slippery-slope arguments surrounding stem cell research, focusing on the chimeric embryo and foetus. She continued her studies at PhD level with research into the translation of stem cell knowledge, concepts and techniques into novel medical

applications, achieving her PhD in Sociology in May 2011 with a thesis entitled Translational Research: An Ethnographic Study of Stem Cell Research. She was then employed by Egenis as an Associate Research Fellow. In September 2012 Jean took up a post in the NIHR Biomedical Research Centre at King’s College London as a Research Fellow in the Social Science of Transplantation. Here she is working on the social conceptualisation of biomarkers as indicators of transplant tolerance.

Jean says of her time at Egenis: ‘Undertaking my MSc and PhD at Egenis underpinned exceptional professional and personal growth. Not only was I able to benefit enormously from the knowledge and expertise of the interdisciplinary team, but I also received an incredible level of support and encouragement. I feel privileged to have spent time in a place where drive and enthusiasm is coupled with academic rigour to produce such a rich and vibrant environment.’

Nurturing expertise in social study of science – The Genomics Network’s ‘people legacy’

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Dr Ann Njoki Kingiri (Innogen OU)Ann decided to pursue a PhD because of the challenging environment she found herself in as a biotechnology regulatory officer. She was

required to provide policy guidance on highly technical subjects, which often attracted non-technical judgements and conflicting beliefs about how biotechnology should be regulated. After discussions with Innogen scholars on how to pursue research in this area to better understand these diverse perspectives and their implication on policy, she was awarded an Innogen PhD studentship in the Development Policy & Practice department at the Open University.

Her PhD – An Enquiry into Biosafety Regulations Implementation in Kenya: Perspectives and Roles of Scientists (2009) – focused on regulating agricultural biotechnology and how this process is shaped by scientists as key policy actors.

While at Innogen OU, she was able to connect with key actors in the policy and private arena, including non-governmental organisations (NGOs), and found opportunities to present her research at policy workshops and academic conferences both in Europe and Africa. Additionally, she was supported to do field work in Kenya, which provided an opportunity to understand the context as a researcher.

Ann credits her time at Innogen with significantly shaping her academic and analytical skills, and helping her to build and foster useful collaborations and networks. Immediately following her PhD, she sharpened her research skills as a research fellow with a UK-DfID funded Research into Use Programme implemented in African and Asia. Currently, she is coordinating Science Technology and Innovation (STI) related research at the African Centre for Technology Studies (ACTS) as a research director. ACTS (www.acts.or.ke) is an intergovernmental regional knowledge think tank focusing on STI towards influencing policy and practice in Africa and beyond, and Ann is in charge of capacity building endeavours intended to inform and influence policy in STI for inclusive development.

Dr Nicola Marks (Innogen Edinburgh)Nicola originally planned to do a PhD in genetics and began her studies at the MRC Human Genetics Unit at the University of Edinburgh.

However, she found she was more interested in the social and political aspects of science, and with the support of scholars at Innogen was able to transfer her funding to do a social science PhD at Innogen Edinburgh. Her PhD – Opening Up Spaces for Reflexivity? Scientists and Discourses about Stem Cell Research and Public Engagement (2008) – explored how stem cell researchers talk about their work and engagement, particularly around issues of trust and how scientists’ unacknowledged assumptions might shape actual practices of engagement. During her time at Innogen Edinburgh, she was able to participate in MSc courses to learn about the social shaping of technology and the sociology of

scientific knowledge, undertake fieldwork in Australia, engage with policy makers, and build networks with STS colleagues at international conferences.

Nicola credits Innogen with helping her make her thesis relevant to both the scientific and social science communities. Having scientists and social scientists in her supervision meetings, she was able to think about how her research was of interest to scientists, while also learning new ways of thinking about science in society.

Nicola is currently a lecturer in STS at the University of Wollongong, but also continues to engage with policy makers. She has worked with the Australian federal government to develop a framework for best practice in public engagement, which she hopes will help discussion in areas such as synthetic biology and nanotechnology. She is also a member of the National Committee for HPS (History and Philosophy in Science) and vice president for Asian Outreach on the Australasia Association for Historical, Philosophical and Social Studies of Science working to strengthen links with Asian STS. �

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Towards the close of the 20th century and into the new millennium, a number of concepts and initiatives have come to the fore that have considerable implications for technological development, and the policy framework that relates to this. Concepts such as sustainable development and the precautionary principle are now well established and form an integral part or many governments’ policy agendas, even though opinions differ as to their socio-economic merits and impacts.

During the last few years, a new concept has evolved which is having a marked impact on policies framing the development of new technologies – and biotechnology in particular. This is the concept of ‘responsible innovation’. Considering the implications of policy initiatives upon the interaction of the life sciences with society has been a key function of the Genomics Network during the past 10 years. As the Network now moves to a new phase, what considerations need to be given to the potential socio-economic impacts – both positive and negative – that might result from responsible innovation? We asked experts from both within and beyond the Genomics Network to contribute their thoughts.

Responsible Innovation and the Life Sciences:what might be the implications for future socioeconomic policy?

Chris Berry, Communications Officer, Genomics Forum

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Some sixty years ago the physical chemist and philosopher Michael Polanyi famously wrote ‘You can kill or mutilate the advance of science, you cannot shape it’. Autonomy and the moral division of labour underpinning Polanyi’s independent ‘Republic of Science’ came with certain role responsibilities — relating for example to the production of knowledge and research integrity — that still underpin our institutions of science. These have come under increasing scrutiny since Polanyi’s bold assertion. Promissory statements now explicitly link science with envisaged pathways to economic and social impact i.e. its social context. We now appreciate technoscience is socially and politically constituted, producing not only knowledge, but unexpected impacts, uncertainties and ethical dilemmas; and that governance by the market or regulation is limited, risking technological lock-in. Public dialogues (e.g. around synthetic biology) have emphasised an expectation that scientists, and those that fund them, reflect on the wider context of their research and visions of application, and respond accordingly. One can sense Polanyi’s now invisible hand clenching.

Rising from this, and evolving from decades of thought in science and technological studies and beyond – including technology assessment, anticipatory governance and upstream engagement – is an increasingly fashionable concept (particularly at an EU level): ‘responsible innovation’. This intuitively feels right – but in reality lacks clarity in meaning, how it might be ‘done’ and underlying motivations. Given the potential for instrumental conditioning, could it (as Andy Stirling puts it) empower social agency in technological choice? If so we may need to rethink responsibility, less in

terms of liability and accountability and more as concepts of care and responsiveness. These allow collective reflection on values and accommodate uncertainty. They will be very familiar to parents, who cannot predict their childrens’ lives, lovers, careers and crimes, but seek to instil values and then respond as their children grow up in an uncertain, changing world.

The departure point here is not ‘what are the risks?’ (important though this is) but ‘what sort of future do we want science and innovation to bring into the world?’ (their very purposes) and ‘how should we proceed under conditions of ignorance and uncertainty?’ Can institutions of science become more anticipatory, reflexive and inclusively deliberative in an integrated way such that trajectories of innovation respond? This will enlarge, even redefine, existing role responsibilities, but could also create opportunities to realise value in socially desirable ways.

ESRC, EPSRC and the Technology Strategy Board (TSB) are now giving responsible innovation serious thought, asking what it might mean for them, and those they fund. Experiments in responsible innovation (e.g. the recent Synthetic Biology Industrial Feasibility Competition – led by TSB) will inevitably not be ‘right first time’. But this experimentation is crucially important. If responsible innovation is to create a culture change and be genuinely valued, now is the time to engage, to experiment, challenge and co-create. An opening door invites us to cross the threshold. The Genomics Network has much to contribute in terms of what could lie beyond.

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Professor Richard Owen, Chair of Responsible Innovation, University of Exeter

The ‘rise’ of Responsible Innovation


Responsible Innovation (RI) recognises that new technologies can help to change nature and society so radically that the world for which established regulations (and even moral codes) were created may no longer exist. We could say that in the wake of such innovations the future facing us is no longer what it used to be. RI requires that innovators think harder - and more inclusively, in concert with wider circles of stakeholders, including the public – about whether the future their efforts might create will genuinely be a better one. Consequently, innovators are held responsible both for trying to anticipate unexpected risks, and for ensuring that, as a recent EC report on ‘responsible research and innovation’ points out, innovation aims at the ‘right impacts’i.

Senior members of Cesagen, such as Professor Brian Wynne, were deeply involved in seminal debates in this area during the 1990s over the social purposes of innovation and the importance of public deliberation on new technologies. Over the last 10 years, Cesagen researchers have examined the governance of biobanking, the future of nutrigenomics, and nanotechnology in ways that have helped to inform the developing RI agenda in the UK and EU.

Most recently, Cesagen has examined the extent to which RI has formed part of the strategic approach of US-based companies involved in developing and selling personal genomics (PG) testing. PG uses the latest genetic technologies to provide information to customers regarding their individual risk of developing a wide range of rare and common diseases. From the moment the first wave of companies launched in 2007, scientists, clinicians and ethicists accused them of irresponsible marketing, questioning the scientific validity of their tests, and pointing to the lack of an appropriate federal regulatory framework.

Cesagen researchii has shown how companies have carefully represented themselves as responsible innovators, initiating public discussion on how to increase the wider social value of their services, and thus achieve the ‘right impacts’. California-based company 23andMe is a good example. Along with other companies, it has promoted, in dialogue with regulators, a set of voluntary standards for the PG industry to assist with filling regulatory gaps. At the same time, they have built their business model on a programme of ‘crowdsourced’ research that – provided customers consent to it – uses clients’ test results to further genetic research in the public domain.

At the same time, however, the Cesagen project has shown that RI brings new potential for conflict, even though it encourages industry to take responsibility in the face of regulatory uncertainty. Companies may be able to use the rhetoric of RI to influence regulatory agendas in ways favourable to them. The Cesagen research shows, for example, how PG companies have promoted the idea that ‘personal utility’ will be a key dimension of the social value of their products, independent of any value they may have for clinical decision-making. They have thus argued that regulators should not regulate products based on measures of clinical usefulness, as people may still be able to use PG information about health risks to improve their lives even if its clinical utility remains unproven. With an eye on the future of RI, this continuing controversy confirms that defining what the ‘right impacts’ of innovation might be will be an arena in which mechanisms for dealing transparently with conflict will be as important as the need for future-oriented responsibility.

Dr Chris Groves, Cesagen

Responsible Innovation – ‘The future is no longer what it used to be’

FROM PREVIOUS PAGE �28

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Responsible Research and Innovation (RRI)iii , as a response to societal demands for reassurance about the safety and efficacy of new technologies, particularly life science research and technological innovation, has its roots in ELSI (Ethical, Legal and Social Implications) research. Derived from a tradition of rules-based biomedical ethics, the ELSI approach has been criticised for perpetuating ‘ethics as usual’ focused on the critical analysis, but not the resolution, of issuesiv. In Europe, ELSI initiatives emerged from the switch to a more bottom-up, ‘governance-based’ approach to the funding and management of science and innovation that started in the 1980sv, linked to the implementation of the precautionary principlevi. More recently, there are mounting concerns that contemporary social research can be dominated or manipulated by vested interests, particularly those with an uncritical anti-technology biasvii.

In the worst-case scenario, RRI would merely continue the problematic ELSI agenda under a new guise. ‘Irresponsible research and innovation’ is an unlikely outcome, but failing to improve upon the legacy of ELSI-inflected social research on innovation could deliver irresponsible stagnation in important areas of innovation.

How could RRI help to ensure maximum benefit to society and innovators from public and commercial investment in life science research and innovation?

1. It should distinguish practical issues of risk regulation that should be dealt with on the basis of scientific evidence from broader ethical considerations about innovation that require inputs beyond and including science. Decisions about the safety and efficacy of new technologies should be based on open standards for the quality of the evidence that contributes to decision-making. Equally, responsible innovation is unlikely where minority views dominate, without scrutiny or accountability.

2. RRI initiatives should consider potential policy and regulatory responses to ethical concerns about innovation rather than foregoing the innovation itself, and encourage adoption of innovation as a positive approach to meeting ethical concernsviii.

3. The need remains to balance risks, costs and benefits to deliver the optimal social outcomes from research and innovation, and RRI initiatives should improve on the metrics and methods adopted to achieve this.

4. New approaches should encourage active learning among citizens and innovators about RRI and its implementation, i.e. RRI processes need to be developed in close collaboration with scientists and companies.

This broader approach to RRI will require the field to be opened up to new actors in new roles. In particular, scientists, companies and policy makers should be involved in active co-development of RRI, rather than being treated as passive recipients of its outcomes or, at best, being invited to contribute as co-participants in engagement. To do otherwise runs the risk that RRI will be perceived as, and may actually become, a box-ticking managerial approach in which empty procedure overtakes the difficult task of understanding and overcoming disagreements. Likewise RRI’s broader focus will require involvement of a much wider range of social science disciplines than has previously been the case, including an active debate about the relative roles of specific disciplines. �

Professor Joyce Tait and Professor David Castle, Innogen

A broader approach to Responsible Research and Innovation

i. Von Schomberg, René (Ed.). (2011). Towards responsible research and innovation in the

information and communication technologies and security technologies fields. Brussels:

European Commission.

ii. Groves, Chris, & Tutton, R. (2013). Walking the tightrope: Expectations and standards in

personal genomics. BioSocieties, forthcoming.

iii. Sutcliffe, H. (2011) A Report on Responsible Research and Innovation. Prepared for the

European Commission DG Research and Innovation. http://www.matterforall.org/pdf/

RRI-Report2.pdf

iv. Editors (2001) Defining a new bioethic. Nature Genetics. 28:297-8.

v. Lyall, C. and Tait, J. (eds.) (2005) New Modes of Governance: Developing an Integrated

Policy Approach to Science, Technology, Risk and the Environment. Aldershot, Hampshire:

Ashgate Publishing Ltd.

vi. Tait, J. and Barker, G., (2011) Global food security and the governance of modern

biotechnologies: opportunities and challenges for Europe EMBO Reports, 12, pp763-768.

vii. Tait, J. (2009) Upstream Engagement and the Governance of Science: the shadow of the

GM crops experience in Europe. EMBO Reports. Vol 10, Special Issue, pp 18-22

viii. Nuffield Council on Bioethics (2011) Biofuels: Ethical Issues. http://www.nuffieldbioethics.

org/sites/default/files/Biofuels_ethical_issues_FULL%20REPORT_0.pdf

References

If you have been engaged by the issues raised in these articles, consider attending the session on Responsible Innovation at the EGN 2013 Conference. www.genomicsnetwork.ac.uk/forum/conf2013

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Following the formal end of the ESRC Genomics Network in late Spring 2013, information relating to the three remaining Centres, and the Genomics Forum and Network can be obtained as follows:

Remaining Centres

Institute for Innovation Generation in the Life Sciences

The University of EdinburghEdinburgh EH1 1LZTel: +44 (0)131 650 9113

The Open UniversityMilton Keynes MK7 6AATel: +44 (0) 1908 654782

www.innogen.ac.uk

The ESRC Genomics Network and The Genomics ForumFrom June 2013 the ESRC Genomics Forum, and the ESRC Genomics Network will formally cease to exist.

An archive site for both initiatives will be developed in Summer 2013. This will display historical information on the outputs and activities of the Network and Forum.

Information on new web presences for the remaining Centres can also be obtained at this site.

The URL for the archive site is:www.genomicsnetwork.ac.uk

CesageneCardiff Centre for Ethical and Social Aspects of Genomics and Epigenetics

Cardiff UniversityCardiff CF10 3BG

Tel: +44 (0)29 2087 0024

www.cardiff.ac.uk/cesagene

EgenisThe University of ExeterExeter EX4 4PJ

Tel: +44 (0)1392 725140 Email: [email protected]

www.exeter.ac.uk/egenis

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During the course of the last decade, the ESRC Genomics Network has been highly effective in undertaking research in the socio-economic impacts of the life sciences, and in engaging a wide range of stakeholders in the debate around advances in biotechnology. To summarise, in numbers, the achievements of the four Centres that make up the Genomics Network collectively they have:

The ESRC Genomics Network in numbers

Engaged

273research staff and visiting research fellows.

Produced

1755publications, including papers, book chapters, books and reports.

Produced or been leading participants in

1184public engagement and policy consultation initiatives.

ngers,

Generated

612articles and reports in the media.

Published by: ESRC Genomics Network, Managing Editor: Chris Berry, Editors: Elisabeth Barlow, Claire Packman, Simon Read.

Graphic design: Heehaw Digital.

The ESRC Genomics Network (EGN) is Cesagen, Egenis and Innogen, examining numerous aspects of the social and economic significance of genomics, and the ESRC Genomics Policy and Research Forum, tasked with connecting this research with national policy.

The ESRC Genomics Network Newsletter available on-line and in print format is free.

Image credits: Alistair Gentry (p2, p16), ©iStockphoto.com/Nikada (p2, p7), ©iStockphoto.com/vernonwiley (p6), ©iStockphoto.com/archives (p2, p14), ©iStockphoto.com/Logorilla (p22), ©iStockphoto.com/Jan-Otto (p26)

Disclaimer:

The views and opinions expressed in this publication are those of the contributors and authors of the articles, and are not necessarily the views and opinions of the ESRC or the ESRC Genomics Network. Whilst every effort has been made to ensure the accuracy of the information provided, neither EGN nor its employees or agents can be held responsible for any inaccuracies or omissions in this publication whether caused by negligence or otherwise.

Copyright © ESRC Genomics Network | The University of Edinburgh is a charitable body, registered in Scotland, with regulation number SC005336.

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