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BIOSNews BIOS Issue 16 • Michaelmas Term 2010

In this issue Editorial 1 Abolishing the HFEA: The coalition government’s plans for the regulation of fertility treatment and embryo research in the UK: Emily Jackson 2

Bridging the worlds of scientists and other publics

Crossroads: The VOICES Study Concludes, and a Book Begin: Ilina Singh 5 New effort to improve ethics in transnational research between Europe and China: Christoph Rehmann-Sutter and Renzong Qiu 6 Discovering BioArt in Cologne: Caitlin Cockerton 7 BIOS reading group 2009/10: Kerry Holden 8 BIOS at 4S and EASST 9 Postcard from Anders Kruse Ljungdalh 9 Research updates from Kerstin Klein and Rachel Bell 10 Publications and conference presentations 11 Upcoming events 12

Editorial As the summer reaches its end, numerous changes, events, and activities are well under the way at BIOS: sometimes Autumn actually seems like academia’s springtime – it’s the season when new ideas, new projects, new students, new events, new hopes and new challenges all seem to appear. With so many pieces of work coming to a conclusion, it’s been a quiet but intense summer on the 11th floor, as PhD theses, books, conference papers and other research projects start to emerge. In particular, several PhD students had their vivas or are about to submit their theses, and BIOS is about to wave them a sad goodbye, as they go out into the world, and on to exciting new challenges. At BIOS News, we also would like to wave a particularly tearful goodbye to Joelle Abi-Rached, who recently left London to start a PhD at Harvard University. Her hard work, both in BIOS generally, and in this newsletter, will be hugely missed. But we’re also welcoming a host of new graduate students, visitors and fellows – while at BIOS News, we welcome our new editor Joy Zhang, who will be in charge of the newsletter from the next issue. And if that wasn’t enough new beginnings, a warm welcome also goes to Shahanah and Michael’s newborn baby Ianto, and to

BIOS News Issue 16 • Michaelmas 2010

Anders and Sima’s new arrival, Sara – congratulations to all of you! In the first issue of the new academic year, we start with Emily Jackson’s feature on the British government’s plans to regulate IVF, and her reflections on the possible consequences of the abolition of the Human Fertilisation and Embryology Authority. Meanwhile, entering the last stage of the VOICES project, we follow Ilina Singh through the experiences and challenges of ‘writing around’ the outcome of this project for her forthcoming book on ADHD. Elsewhere, Christoph RehmannSutter and Renzong Qiu report on some of the main findings of the three-year BIONET project, which involved several BIOS members and recently concluded with a major publication on the governance of European-Chinese biomedical research collaborations, while Catlin Cockerton tells us about her five-day summer school experience at the Academy of Media Arts in Cologne, and Kerry Holden talks us through the BIOS reading group’s exciting experiences of the last academic year. Finally, we have the usual updates from our PhD students, and postcards from those who have left. Don’t forget to pencil in your agenda the upcoming events and monitor the BIOS website for further details. Happy reading to everybody – we wish you a great Michaelmas term! The BIOS News team

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Abolishing the HFEA: The coalition government’s plans for the regulation of fertility treatment and embryo research in the UK by Emily Jackson* Just before parliament broke up for its summer recess, in July 2010, the government published its review of the Department of Health’s arms-length bodies (ALBs). Entitled Liberating the NHS, it has alternatively been described as the Bonfire of the Quangos. Liberation from quangos undoubtedly sounds appealing. The word ‘quango’ has virtually no positive overtones. It implies unnecessary and expensive bureaucracy, the abolition of which seems both sensible and unobjectionable. But in amongst the ‘efficiency savings’ which are supposed to result from the rationalisation of ‘back-office’ functions like human resources, questions may remain about how you can save money by getting rid of a ‘quango’ if you are simultaneously committed to preserving all of its functions. While of course the decision as to how, or indeed whether, to regulate a particular area of medical practice or research is properly for the elected government, it is clear that, for a body like the Human Fertilisation and Embryology Authority (HFEA), straightforward abolition of it and all of its functions is not currently a realistic option. The Coalition government’s agenda is undoubtedly not the complete deregulation of all embryo research and fertility treatment in the UK. Indeed it is only two years since the relevant legislation (the Human Fertilisation and Embryology Act 1990) was substantially reformed by the 2008 Act of the same name, and the bulk of these reforms came into force in October 2009, only nine months before the recent announcement of the HFEA’s demise. Going back to the debates in parliament in the 2007-8 session, it is clear that the then Conservative opposition were committed to strict, if not even stricter regulation of fertility

treatment and embryo research. The recent announcement is therefore not rooted in any libertarian desire to free fertility treatment and embryo research from regulation, but is motivated instead by a desire to streamline the regulatory landscape in relation to both research and treatment, and by the need to save money. Yet recent history – and in particular, the previous government’s aborted merger of the HFEA and the Human Tissue Authority – is instructive here. Plans to merge the two bodies into the Regulatory Authority for Tissues and Embryos (RATE) were quite well advanced when the government finally bowed to pressure from scientists and the medical profession and decided, instead, to retain two separate bodies. Importantly, planning for this sort of merger is not cost-free, and so it would be regrettable to embark on another planned ‘rationalisation’, only for it to be abandoned a few years down the line after considerable resources have been expended in what, with hindsight, proves to be pointless preparation for a restructuring that never happens. So how does the government intend to preserve the functions of the HFEA while abolishing the body itself? In effect, its roles are to be split. Embryo research will be moved to a new ‘single research regulator’, which will also take over the regulation of clinical trials, experimental medicine and epidemiological studies. It is undoubtedly true that the interface between the role of the HFEA in relation to research and that of other bodies is currently complex and likely to become more so. As stem cell research moves from bench to bedside, a complex set of relationships emerges between the HFEA, which regulates the derivation of human embryonic stem cells and stem cell

*Emily Jackson is a Professor of Law at the LSE and Deputy Chair of the HFEA.

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Abolishing the HFEA continued…

lines; the HTA, which regulates research on human tissues (including stem cells and stem cell lines); the Medical Research Council’s UK Stem Cell Bank, into which stem cell lines are deposited, subject to certain eligibility criteria; the Medicines and Healthcare products Regulatory Agency (MHRA) which regulates cell-based therapies for human application and finally the National Research Ethics Service (NRES), which coordinates the review of clinical trials in humans. If each of these bodies has slightly different working methods, and slightly different regulatory requirements, it may be difficult for scientists who have to move between these various regulatory frameworks to keep up. On the other hand, if the HFEA disappears and embryo research becomes just one part of a much larger body’s remit, the original justification for setting up the HFEA in the first place – the special status of the human embryo – may become lost. Public support for embryo research in the UK is high, but surveys consistently show that it is contingent on the existence of strict regulation. Parliament has decided, in 1990 and again in 2008, that research on embryos is not just like research on bits of excised human tissue. It requires special justification, and this necessitates some mechanism for ensuring that these strict statutory requirements are policed and enforced. Of course, there is no reason why the body that polices embryo research could not also be in charge of very different sorts of research, but if the new body has to carry out all the functions the HFEA currently carries out in relation to embryo research: inspection, licensing, monitoring etc, it is not obvious that transferring them to a new body will save money, especially since the costs of institutional reorganisation are not themselves negligible. Indeed the current Secretary of State for Health, the Rt Hon Andrew Lansley MP, acknowledged the centrality of the special status of the embryo in the 2008 debates in Parliament (Hansard 12 May 2008 c1073): The Human Fertilisation and Embryology Act 1990 has been a success. The first legislation of its kind in the world, it led to a framework for the development of assisted reproduction and embryo research that has been a positive example for policy making worldwide. … The legislation was rooted in the work of the Warnock committee and its report. It was always clear that the legislation is not intended simply to facilitate research. Technically, it was not needed for that, and research was able to proceed. The issue was that that research required to be established within an ethical framework so that science is bounded, some forms of research are prohibited, and all research on human embryos requires a licence. That was encapsulated in the Warnock committee’s view: “The embryo of the human species ought to have a special status and no-one should undertake research on human embryos the purpose of which could be achieved by the use of animals or in some other way. The status of the embryo is a matter of fundamental principle which should be enshrined in legislation.” BIOS News Issue 16 • Michaelmas 2010

It is a matter of regret to me that the Government appear [sic] to have lost that sense of the intention of legislation. Unless his views have changed dramatically in the past two years, it is evident that the Secretary of State for Health is fully committed to the need for tight regulation rooted in the special status of the human embryo. His intention is indubitably not that the statutory restrictions on research, which are designed to show respect for this special moral status, should be relaxed. Fertility treatment too will continue to be regulated, but this time by the Care Quality Commission – the megaregulator – which will be responsible for regulating virtually all medical treatment in the UK. Some people might argue that this is simply a timely recognition that fertility treatment is no longer an unusual medical treatment, requiring an elaborate and specific regulatory regime. Other medical treatments do not have their own special regulator, so it might be argued that the government’s announcement is simply an acknowledgement of the fact that, while in 1990, IVF was rare, controversial and not properly covered by professional guidance, in 2010, IVF is common, generally well-accepted and professional bodies are capable of issuing their own good practice guidance. That sort of explanation rings hollow, however, if one again goes back to the recent parliamentary debates. In opposition, the Conservatives certainly did not see fertility treatment as entirely routine, raising no special issues. Let’s once more consider the words of the Secretary of State for Health, the Rt Hon Andrew Lansley MP (Hansard 12 May 2008, c1078): Let me turn to embryo testing. We understand that the interests of the child to be born must be paramount. The dignity of life demands that a life should not be created simply to serve the interests of another. However, the testing of embryos to prevent the implantation of an embryo with an inherited or genetic condition will, in many cases, be in the best interests of that child if the condition is life-threatening or would severely impair their quality of life. We will table amendments to ensure that the measures are restricted in that way. Likewise, we believe that the so-called “saviour sibling” provision should be tightly restricted to life-threatening conditions and those that would seriously impair the life of a sibling. The Bill says “serious medical condition”, but it does not specify in sufficient detail the criteria to be applied. The balance of advantage against ethical constraints must be judged case by case, and we need to provide strong language in the legislation to ensure that the Human Fertilisation and Embryology Authority does not allow the

‘Some people might argue that this is simply a timely recognition that fertility treatment is no longer an unusual medical treatment, requiring an elaborate and specific regulatory regime’ 3


Abolishing the HFEA continued…

pregnancy, and hence are unsuitable for transfer or freezing. Others are donated because the couple has completed their family and donating their left-over embryos to research is preferable, to them, to disposal. Having a common regulator which governs anything anyone proposes to do to an embryo may mean that the supernumerary embryo’s journey from clinic to lab can be more easily and effectively regulated. Patients commonly consent to donate embryos to research in the clinic at the same time as they give their consent to treatment, but in the future these two simultaneous consents will be regulated by different regulatory bodies. The research laboratory may be next door to the clinical laboratory, and staffed by the same individuals, but in the future they will be covered by separate regulatory regimes,

boundary of what is to be permitted under the “saviour sibling” provision to be stretched too far over time. We will invite the House to consider amendments for that purpose. This is certainly not a call for abandoning the special regulation of treatments like HLA typing, but, rather, for their ‘tight restriction’. In short, this government has announced that it wants to abolish a long list of arms-length bodies, including the HFEA, but it emphatically does not want to remove the functions that the HFEA performs. Of course it would be a mistake to think that the model we have at the moment is the only one capable of working well, and of course other ways of organizing the HFEA’s functions may be both possible and desirable.

We know from statements made in 2008 that the government believes the embryo’s special status justifies a special regulatory regime, but we also know that they are intending to abolish a single special regulatory framework to replace it with a bifurcated system where different people who propose to do different things to the same embryo (freeze it for use in future treatment, and then, when it is no longer needed for that purpose, use it in research) will fall under two different regulatory umbrellas. Pulling apart the 1990 Act, as amended, in order to retain the common functions of the HFEA but dividing them between two different bodies will require new primary legislation, and will represent an extraordinarily complex task for parliamentary draftsmen. Given recent experience with the Regulatory Authority for Tissues and Embryos that never was, it is also to be hoped that significant sums of public money are not wasted planning for a new world order only to find, at the very last minute, that the old one wasn’t really that broke in the first place.

However, it is important to remember that a severing of the link between the body that regulates the production of almost all human embryos in the UK, through IVF treatment, and the body which regulates all research carried out on those embryos, may create certain risks. The vast majority of embryos, which are used for research in the UK, start their life in the fertility clinic. They are donated to research by couples undergoing fertility treatment, perhaps because they are too morphologically abnormal to have any chance of leading to a viable

‘Having a common regulator which governs anything anyone proposes to do to an embryo may mean that the supernumerary embryo’s journey from clinic to lab can be more easily and effectively regulated’ 4

BIOS News Issue 16 • Michaelmas 2010


Crossroads: The VOICES Study Concludes, and a Book Begins by Ilina Singh*

The VOICES Study has finished recruitment. It felt good to be able to put up that notice on the VOICES website at the close of 2009 (www.adhdvoices. com). Now in its final year of funding, VOICES (Voices on Identity, Childhood, Ethics and Stimulants) is undergoing that metamorphosis from data collection and analysis into data ‘outputs’ – specifically, a series of publications, one of which will be a book. These days I feel a certain amount of pressure to be able to talk about my ‘findings.’ People say things like, Oh, you’re writing up; what are your findings? At the point where I am – in the middle of writing my first book – I get stuck on the phrase writing up. It’s as though discovery is necessarily a vertical process, taking us skyward. Maybe that’s how it ends, but at first, the writing is less straightforward and more circular. Writing around is a better description than writing up. Part of writing around is the discovery of voice. Unlike a dissertation or a thesis, writing a book presents a simultaneously bewildering and wonderful degree of freedom in relation to voice. Maintenance of that distant, objective academic stance is a choice. I can also choose to present myself as an active ‘I’ – a character in my findings. I can cogitate, contemplate, opine, judge, tell jokes or write poems – as I wish. But not just as I wish. It needs to work for the book. So it’s a process of mutual discovery really – the book and my voice discover themselves in each other. I’m trying to write in a way that foregrounds the voices of the children we interviewed. Following the arc of children’s thoughts can be difficult amidst the ‘umms’ and ‘likes’ – the semiotic stutterings of young people (ages 9-14) asked to discuss difficult concepts, such as how the stimulants they take for Attention Deficit Hyperactivity Disorder (ADHD) might be working in their brains; and whether taking stimulants has made them think differently about who they are as a person. I don’t want to walk alongside these intrepid young explorers of brain, behavior and identity wearing heavy academic boots, overwhelming their voices with theory and jargon. Because I want a wider world to know these kids, I explored the idea of a trade publisher for this book. I was sure that a book on ADHD – the world’s most common child psychiatric diagnosis – and the ethics of stimulant drug treatments, told from children’s perspectives, would sell in the trade market. After all, my book is the antidote to all the strong, wrong messaging that exists in the world of trade books about ADHD (!). I had to wake up from an ivory-coloured dream of BIOS News Issue 16 • Michaelmas 2010

universal interest in these topics; and then I had to wake up to the reality of how agents and publishers view the market for non-fiction books about children. Despite the topical mix of meds, morals, brain and behavior, my ‘thoughtful and nuanced approach’ (compliments from a publisher) seems unfortunately un-sexy. It turns out (perhaps everyone knows this) that there exists a thing called a ‘crossover book’ – a hybrid trade-academic book that can sit in several bookshop sections (or their electronic equivalent), is sufficiently high-level for academics, but is also accessible and interesting to non-academic professionals. In fact, some of my favorite books are crossover books: Emily Martin’s excellent book, The Woman in the Body and more recently, Jonathan Metzl’s book on schizophrenia and race, The Protest Psychosis, were both published by Beacon Press. The iconic crossover book on psychotropic drugs and identity is, of course, Listening to Prozac, written by Peter Kramer and published by Penguin. In this twilight of the time of books, a crossover book is a risky proposition for a trade publisher and, by extension, for an author. Still, I like the idea of crossing-over. After all, it’s what many of us in BIOS do; we build bridges between the worlds of scientists, social scientists, policy makers and various publics; and we walk back and forth along those bridges as part of our research. Crossings have certainly been at the core of the VOICES study: geographic, disciplinary, linguistic and emotional crossings. The result is a unique archive of qualitative and quantitative data, the centre of which is over 200 interviews with children (research assistance provided by, in order of appearance: Sinead Keenan, Caitlin Connors, Katelyn Thomas, Chris Kelleher, Zoe Given-Wilson). The archive is a treasure trove in itself. It’s also an evidence base for answers to the difficult social and ethical questions raised by the use of stimulant drugs, and it provides entirely new insights into ADHD as an experienced condition. The evidence challenges us, as scholars, educators, clinicians and parents, to learn from listening to children. If we do, I expect clinical and d educational practices will begin to change, as will everyday yday understanding of ADHD and stimulant drug treatments. ts. I’m looking forward to the time when writing around and/ or up no longer haunts my days and nights. Book-writing ing is hard and unpredictable. On really bad days I thank goodness for internet shopping and for my own children, en, who are incapable of following the ‘please do not disturb urb unless real emergency’ instruction on my closed homeeoffice door. Distraction is frequently followed by panic,, and panic can be inspiring. *Ilina Singh is Reader in Bioethics & Society and Associate Director or of BIOS. The book’s working title is: Are You Paying Attention? Children’s Perspectives on Behavior, Identity, Ritalin and ADHD. The VOICES study is funded by a Wellcome Trust University Award, rd, supplemented by a Sticerd grant from LSE.

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New effort to improve ethics in transnational research between Europe and China by Christoph Rehmann-Sutter* and Renzong Qiu**

Thirty recommendations to guide best practice in the governance of EuropeanChinese biomedical research collaborations have been published. There is a need to establish stronger collaborative oversight structures. Many important ethical points to consider emerged from a series of extensive explorative workshops in China. The key proposal is to establish a standing Sino-European platform on biomedical research ethics. The document is the main result of a three year project ‘BIONET’, which has been funded by the EU-Sixth Framework Program (FP6) and the United Kingdom’s Medical Research Council (MRC), with support from the Chinese Ministry of Health (MoH) and Ministry of Science and Technology (MoST). Topics treated cover human subjects research, in particular clinical trials, biobanking and personal genomics, stem cell research, reproductive and regenerative medicine. Collaboration can be a huge advantage for academic researchers on both sides. Perhaps most well-known are examples of multi-centre clinical trials conducted for pharmaceutical companies by local contractors in China, where the economic, social and political background is favourable; or the leading role of Chinese genome sequencing centres playing in the world-wide top league. There is a growing Chinese bioethics community, interdisciplinary ethics review boards have been set up in the clinics, and in 2000 the Ministry of Health has established a National Ethics Committee.

However, there are still regulatory gaps. The focus of BIONET was the issue of the socio-cultural differences in-between European and Chinese contexts. BIONET chose not to search for a general answer ‘for China’ or ‘for Europe’, because this would overlook the internal diversity on both sides. More useful is an answer from procedure: how should the process of adapting the idea of informed consent in a particular context be structured? Which aspects need to be considered if the process should lead to a result that then deserves to be called ethical? The 20-partner network project BIONET worked on the basis of six investigative workshops and conferences, five of them held in China. Each of the focussed four-day events enabled intensive exchange between the involved Chinese and European experts. Before their publication, the recommendations were revised after discussions at a final conference held at the Wellcome Trust in London last October. We sincerely hope that the proposals will be heard and that its ideas will stimulate critical and constructive discussions.

*Institute for the History of Medicine and Science Studies, University of Lübeck, Germany. rehmann@imgwf.uni-luebeck.de **Institute of Philosophy/Centre for Applied Ethics, Chinese Academy of Social Sciences, Beijing, China. rzq@chinaphs.org

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BIOS News Issue 16 • Michaelmas 2010


Discovering BioArt in Cologne by Caitlin Cockerton

Tales of performance art in which dandelions are fed viewers’ blood; other forms of ‘gorilla BioArt’ in which life-like constructions and eerily filled test-tubes are strategically placed in public or gallery spaces; reports on the latest projects from SymbioticA, a highly regarded centre for BioArt in Perth; provocative claims from an expert art historian that ‘BioArt is dead’; works of intricate knitting and weaving using bacterial colonies or tissue cultures… These are just some of the topics discussed during a unique five-day summer school that I attended in the heat of July, hosted at the Academy of Media Arts in Cologne. ‘Living Matter: Art, Research and Science Studies in Biological Laboratories’ brought together around 25 people from diverse backgrounds (art, design, sociology, philosophy, art history, corporate pharmaceuticals – to name a few) to consider how working in the context of biological laboratories informs the artistic production, writing and other projects that these participants are involved with. Closer to my work, this summer school included discussions around definitions of ‘life’ and ‘the living’, what it means to be a participant-observer in biological laboratories and explorations of epistemic objects and cultures in the life sciences. However, what was new and very interesting for me in those five days was gaining a better understanding of BioArt. Broadly, BioArt uses living matter (or, at least, materials that resemble living matter) and sometimes experiments with tools and techniques in areas such as tissue culturing and genetic engineering in order to raise social, ethical and aesthetic questions. BioArt is often intended to be provocative, sometimes funny, sometimes beautiful and sometimes grotesque. It grabs its viewer and pushes her to think about herself, her embodiment, the living world and the possible futures that biotech might deliver.

competition (iGEM). In my ethnographic work with the Cambridge and Imperial College 2009 iGEM teams, I was struck by the kind of imaginative thinking that was involved in that initial stage of these projects. Blue sky ideas for constructing biological counterfeit bill detectors, bacterial radios, taking and displaying pictures with E. coli, developing a bacterial shaving and sunless tanning agent, making bacteria that produce a rainbow of colours and finding a way for engineered microbes to help end world hunger were all on the list of contending possible projects for these young practitioners of synthetic biology. The unique pocket of creative thinking that I was able to observe in iGEM groups can fit into a large literature in STS scholarship that tracks knowledge and material production in science. However, I have also found that there are several overlaps between the kinds of thinking that blue sky bioengineering occasionally embarks upon, and that which goes on in the minds of some BioArtists. Presenting and exchanging my ideas not only between academics in the humanities and life sciences, but also more broadly with artists, designers and even those marketing biological products of the future, has helped me to deepen my thinking and, as ever, ask more questions! Credited to Anna Dumitriu, The Normal Flora Project www.normalflora.co.uk/

Moreover, I learned that BioArt is many things, encompassing different (and sometimes conflicting) beliefs, practices and outputs coming from various factions of the wider community. Some of the summer school’s participants strongly believe that BioArt is about working with real biological materials – one isn’t a ‘real’ BioArtist unless hands are dirtied in some sort of laboratory (be it make-shift in a kitchen or at an institution). Other debates circulated around varying levels of scientific and experimental engagement with one’s own body and with viewers in exhibition spaces; different degrees of science curiosities – including a near worshipping of ant colonies – also separated some groupings in the school; finally, I observed that within this community, there exists a wide range from the highly supportive to extremely critical views on the possible futures that biotech might deliver. For me, this was an exciting place to discuss a particular section of my thesis that focuses on what it means for young scientists and engineers to initially ‘dream up idea as they endeavour to design and build a biological system for the International Genetically Engineered Machines BIOS News Issue 16 • Michaelmas 2010

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BIOS reading group 2009/10 by Kerry Holden

Throughout the 2009/10 academic year, the BIOS reading group continued to discuss key readings in sociology, philosophy and natural science. The Michaelmas Term was anchored around the theme of biological origins starting with an article chosen by Caitlin Cockerton and taken from the New Yorker about the possibilities and limits of synthetic biology. The remaining two reading groups worked back in time focusing first on Canguilhem’s influential and critical work on vitality and Knowledge of Life, led by visiting research student Anders Ljungdahl, and then on Darwin’s Origin of Species and the status of nature in Victorian England, led by Alex Hamilton. The Lent Term began with a discussion led by Claire Marris and Valentina Amorese on public engagement in science, reading work by Michel Callon and Sheila Jasanoff that questioned the role of lay participation in the production of new knowledge. Questioning the role of ‘critique’ formed the focus of the second reading group, in which Des Fitzgerald led a discussion of Quentin Meillasoux’s writing on ‘correlationism,’ alongside Bruno Latour’s deliberation on the shift from “matters of fact to matters of concern”. The third reading group, led by Caitlin Cockerton, was dedicated to the work of philosopher Ian Hacking, featuring chapters from Representing and Intervening and the Social Construction of What? In the Summer Term, Sarah Franklin led the first discussion with a reading on trans-biology. This was followed by John MacArtney’s and Kerry Holden’s discussion on time, narrative and subjectivity with readings taken from Michel Serres in conversation with Bruno Latour and Fabian’s Time and the Other. In the final reading group of the year, Carrie Friese chose Helen Leach’s chapter in Where the Wild Things are Now to turn the discussion toward animal/human relationships and in particular the history of domestication.

Specter, M (2009) ‘A Life of it Own’, The New Yorker. September 28 Canguilhem, G (1965/2009) Knowledge of Life. New York: Fordham University Press Darwin, C (1859) The Origin of Species. London: John Murray. Young, R (1988) Darwin’s Metaphor: Nature’s Place in Victorian Culture. Cambridge, UK: Cambridge University Press Callon, M, Lascoumes, P and Barthes, Y (2009) Acting in an Uncertain World: an Essay on Technical Democracy. Cambridge, MA: MIT Press. Chapter 1: ‘hybrid forms’ Jasanoff, S (2005) Designs on Nature. Princeton, NJ: Princeton University Press. Chapter 10: ‘Civic Epistemology’ Serres M. and Latour, B (Lapidus R trans), (1995) Conversations on Science, Culture and Time, University of Michigan. (Second Conversation: Method, pp. 43-76) Meillassoux, Q (2009) After Finitude: Essays on the Necessity of Contingency. London: Continuum Books Latour, B (2004) ‘Why has critique run out of steam? From matters of fact to matters of concern’ Critical Inquiry 30 (2) Hacking, I (1983) Representing and Intervening: Introductory Topics in the History of Natural Science. Cambridge, UK: Cambridge University Press Hacking, I (1999) The Social Construction of What? Cambridge, MA: Harvard University Press Fabian, J (1983) Time and the Other. New York: Columbia University Press. (Chapter 3: Time and Writing about the Other, pp. 71-104) Cassidy, R and Mullin, M (eds.) (2009) Where the Wild Things are Now: Domestication reconsidered. Oxford: Berg. Chapter 3: ‘selection and the unseen consequences of domestication’.

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Out now! Vol. 5, Issue 4

The latest issue of BioSocieties includes a Special Section on “Perspectives on Globalizing Genomics: The Case of ‘BRCA’ Breast Cancer Research and Medical Practice”. We are particularly excited about publishing these articles because they examine an array of breast cancer genetics developments that have occurred transnationally, including research in Cuba, the UK, the US, Greece, and Germany. Together they offer comparative studies tudies of the co-constitution of sciences, clinical efforts, public and private health care, and the creation of distinctive new populations and subjectivities. In addition to the Special Section, this issue of BioSocieties, following our general interest in social studies of neuroscience, includes an interview with Dr. David Kupfer, chair of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) task force as well as a section on the neuroenhancement debate.

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BIOS News Issue 16 • Michaelmas 2010


BIOS at 4S and EASST There was a notably high BIOS turn-out at the recent 4S (Society for the Social Studies of Science) annual meeting in Tokyo: as well as a contingent of current PhD students presenting at the conference, there were quite a few alumni and visitors around, as well as other close friends, colleagues and affiliates. The conference wisely took a very broad theme of ‘STS in Global Contexts’ – and though it’s really impossible to identify any major emerging strands at such an enormous meeting (the 230-odd sessions ranged from rice to robots, from contemporary energy policy to colonial science), the explicit goal of strengthening dialogue between STS and (STS-related) researchers from different global contexts certainly seemed to be achieved, And it’s probably a bit of a cliché to note this, but negotiating the streets of Tokyo itself provided a sharp lesson in how complex layers of ‘science’ and ‘technology’ can be woven into the daily life of a major city – from delicately fanning yourself among the cicadas in the stifling humidity, to paying for your noodles at a vending machine, to scuttling, wide-eyed, across the famous Shibuya intersection. For those of us who made it to the EASST (the European Association for the Study of Science and Technology) meeting

the following week, the beautiful and placid Italian city of Trento provided a rather sharp contrast. Here, the given theme was ‘Practicing science and technology, performing the social,’ and, although it might just reflect my own bias for session attendance, there seemed to be a particular emphasis, in quite a few presentations, on locating the material distinctiveness of science and technology in everyday life. There was also, I thought, perhaps a more ‘technical’ inflection to this meeting than 4S – which perhaps reflects the varied development of the now-vast sub-discipline of Science and Technology Studies in different locations. Once again, it was a great pleasure to run into so many friends and associates of BIOS in Trento, which provided a nice opportunity to catch up with some of our distant colleagues over an espresso.

Postcards to BIOS

Dear Biosians, Just a note to say hello, and to let you all know how things are going in Copenhagen. I have almost finished writing up the dissertation, so the conclusion is fast approaching. I’ll be looking forward to defending it sometime in the spring months, 2011. Things are also going great for the family – Sara is three months now. She is looking forward to wrapping me around her little finger every day, as soon as I go on paternal leave. As you can see from the picture she is helping me to get my head around some serious issues about life, which, by the way, has been turned upside down from the moment she was born. I hope you are all doing great, and I’ll be looking forward to visiting BIOS again – perhaps with the little one during the leave. Best wishes,

Anders Kruse Ljungdalh

BIOS News Issue 16 • Michaelmas 2010

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Research updates

Kerstin Klein

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Kerstin Klein, Doctor in Sociology I completed my doctorate in the summer term with a thesis titled ‘Illiberal Biopolitics, Embryonic Life and the Stem Cell Controversy in China’. The thesis examines the contentious field of human embryonic stem cell research (hESCR) and the nature of debates that have taken place about it, or not, in the Chinese reformed authoritarian one-party state. Following Michel Foucault, controversies are understood as particular forms of politics, namely the political play of competing truth claims. My thesis conceptualizes the governance of stem cells and human embryos as aspects of a ‘politics of life’, or rather the politics of ‘embryonic life’, and by doing so it makes a proposal toward the development of a notion of ‘illiberal biopolitics’. Empirically, I have looked at the Chinese debates about the use of human embryos and the ethical aspects of stem cell research in three different arenas, policy-making, mass media (newspapers) and people’s opinions. Looking at these debates from the perspective of interpretation and problematization, it was possible to understand how an authoritarian regime is able to prop up a morally controversial biotechnology like hESCR as a matter of national importance and rejuvenation, and I argue that this is inextricably linked with an attempt to overcome history and a national sentiment of humiliation and defeat deeply rooted in China’s history of the 19th century. Today, an official narrative about Chineseness and Confucian bioethics in lack of moral scruples about the use of human embryos in biomedical research, which is widely echoed in the West, has aided the policy arena to create one of the most liberal policy frameworks for hESCR in the world. While the media analysis demonstrates the policy arena’s dominant role in the shaping of news-frames in a system of top-down guidance of public opinion, the analysis of Chinese people’s perceptions identifies not only a much greater diversity and concern for embryonic life but also a gradual opening of the public space of argument characterized by new actors (e.g. NGO’s), themes (eg, environment, GM food, risk) and spaces of debate (e.g. internet), which are promising developments and trends in political communication and the gradual emergence of a not-so-silent public in China. However, at the intersection of reproductive and regenerative medicine, as I am showing in the final chapter of my thesis, in the regime of biopolitics of the Chinese state, in the interplay of the authoritarian state, the one-child policy and biomedical policies and practice the value of spare embryonic life is not a reproductive one. This is because couples in IVF treatment are not allowed to give birth to more than one child. Instead, the opposite is rather the case, the value of Chinese leftover embryonic life is a regenerative one, one as an experimental resource, for IVF patients are also not allowed to donate their often many spare embryos for other couples’ reproduction, with embryo donation to stem cell research being the only legal option. I am showing this in a more extensive argument in a book chapter published in July. Nevertheless, in the final analysis a theoretical attempt to characterize ‘illiberal biopolitics’ is also a proposal to use the concept more comparatively rather than only as a tool to study biopolitical practices in illiberal regimes. That is, ‘illiberal biopolitics’ can also be employed to all those practices of genetic or other forms of biopolitics that are coercive or govern without a distance even within liberal modernity itself.

Two publications have recently come out of this with more being planned, but for the time being I am enjoying a change working as a researcher in a clinical context in the field of sexual health, cancer prevention and pre-cancer treatment. Following the PhD, this is a much welcomed ‘mental pause’ which at the same time allows me to gain valuable experiences in an applied setting comprising institutional ethics approval and clinical trials.

Rachel Bell, PhD candidate I joined the Brain, Self and Society team in 2007 with a research studentship attached to the project. I began with very little knowledge of my field of study, being directed only by a keen interest in the ways in neurobiology might be starting to impact the ways in which violent and antisocial behaviour are understood and managed. After a year’s voracious reading covering everything from Ludwig Fleck to the backwaters of the Ministry of Justice website and a painful few months getting through NHS research ethics clearance, I found myself doing a multi-sited ethnography in a medium secure hospital and amongst policy makers and lobbyists. For me, the fieldwork was the highlight of the PhD. From interviewing a policy-maker over a cappuccino outside Victoria Station, to eating jellied eels with a forensic patient in Croydon, the shear variety of opportunities to spend time learning about other people’s work, lives and aspirations was an extraordinary privilege that was interwoven with the process of research. That biology might provide the basis for reductive accounts of violent and antisocial behaviour was an unfounded expectation I brought to my research. As the months passed by and my fieldnotes filled up with more and more colour, I gradually began to realize that, if anything, the opposite was the case. References to biology merged almost seamlessly with psychodynamic accounts of child-development, illicit drug use, or angry exchanges in the dinner queue. I was forced to revisit my suppositions, and to realize that references to neurobiology were used more often to substantiate existing psychological and sociological theories than to over-ride them. In the policy environment in particular, activists treated neurobiology as a resource with which to publicly substantiate their beliefs about child-development and to make the case for investment into psychosocial interventions. Another counter-intuitive finding was that, contrary to the fears of some commentators, neurobiologically informed accounts of violent and antisocial behaviour tended not to give rise to deterministic forms of thinking. Instead, consistent with findings elsewhere in the sociology of biomedicine, the neurobiology of social and antisocial behaviour was treated as a contingent variable, and one that can be optimized to create people less disposed to violent and antisocial outbursts. Biological accounts of behaviour gave rise to a series of creative psychosocial proposals for preventing the development of and managing violent and antisocial traits. The past three years have been sometimes fun, sometimes frustrating. One personal decision that has arisen has been the choice to leave academia and get more personally involved in the field I have studied; from September I’m going to be working in the prison service. But I still look forward to dropping into BIOS over coming months

BIOS News Issue 16 • Michaelmas 2010


Publications, lectures and conference presentations by BIOS staff, associates and students Publications Abi-Rached J M, Rose, N and Mogoutov, A (2010) ‘Mapping the Rise of the New Brain Sciences’. Brain Self and Society Working Paper No. 4. BIOS (Centre for the Study of Bioscience, Biomedicine, Biotechnology and Society), London School of Economics and Political Science. London, UK. Available at: www.lse.ac.uk/ collections/brainSelfSociety/publications.htm Ajana, B. (2010) ‘Recombinant Identities: Biometrics and Narrative Bioethics’, Journal of Bioethical Inquiry, 7(2): 237-258. Franklin, S (2010) ‘Revisiting Reprotech: Firestone and the Question of Technology’. In, M. Merck and S. Stanford (eds.), Further Adventures of the Dialectic of Sex: Critical Essays on Shulamith Firestone. London: Palgrave: 29-60. Franklin, S (2010) The Impact of Impact (Report on ‘The Impact of Impact’ workshop addressing the implications of the addition of an ‘impact assessment’ element to the forthcoming UK Research Evaluation Framework, REF). Jackson, E (2010 ) ‘Top up fees for expensive cancer drugs: Medicines, Fairness and the NHS’, Modern Law Review, 73(3): 399-427. Jackson, E (2010) ‘Re N (A child): Commentary’. In, R Hunter, C McGlynn & E Rackley (eds.), Feminist Judgments: From Theory to Practice. Hart. Jackson, E (2010) ‘Success rates’ and clinical practice in the fertility clinic’. In, Martin Johnson et al. (eds.), Birth Rites and Rights. Hart. Franklin , S, Johnson, M, Cottingham, M & Hopwood, N (2010) ‘Why The Medical Research Council Refused Robert Edwards and Patrick Steptoe Support for Research on Human Conception in 1971’, Human Reproduction, 25 (9): 2157-2174. Klein, K (2010) ‘Illiberal Biopolitics and “Embryonic Life”: the Governance of Human Embryonic Stem Cell Research in China’. In, J. Yorke (ed.), The Right to Life and the Value of Life: Orientations in Law, Politics and Ethics Ashgate: 399-422. Klein, K (2010) ‘New Authoritarianism’ in China: Political Reform in the One-Party State’. In, R Berman and B Wang (eds.), China: Critical Theory, Market Society, and Culture, TELOS, 151: 1-27. Singh, I & Keenan, S (2010) ‘Challenges and opportunities in qualitative health research with children’. In, I Bourgeault, R Dingwall & R DeVries, (eds.) The SAGE Handbook of Qualitative Methods in Health Research. London: Sage Press. Singh, I, Ford, P, Jacova, C, & Illes, J (2010) ‘Being and Thinking’. In, T Kushner, (ed.) Surviving Healthcare. Cambridge: University of Cambridge Press: 222-245. Singh, I, Kendall, T, Taylor, C, Hollis, C, Batty, M, Mears, A, Keenan, S (2010) The experience of children and young people with ADHD and stimulant medication: A qualitative study for the NICE guideline. Child and Adolescent Mental Health. Published online May 2010, doi: 10.1111/j.1475-3588.2010.00565.x Singh, I & Kelleher, K J (2010) ‘Neuroenhancement in young people: Proposal for research, policy and clinical management’. American Journal of Bioethics – Neuroscience, 1 (1): 3-16. Zhang, J Y (2010) ‘The cosmopolitanization of science: Experience from China’s stem cell scientists’. Soziale Welt (Special issue in English), 61: 255-274.

BIOS News Issue 16 • Michaelmas 2010

Zhang, J Y (2010) ‘The organization of scientists and its relation to scientific productivity: Perceptions of Chinese stem cell researchers’. Biosocieties, 5(2): 219-235.

Presentations Bell, R (25-27 May 2010). ‘Forensic neurobiological research in policy making: (mis)translations and responsibilities for antisocial behaviour’. Mental Health and Forensic Practice Across the Lifespan: Prevention and Promotion. Vancouver, Canada. Bell, R (21-22 May 2010). ‘Promoting individual and social responsibilities for antisocial behaviour: the role of neurobiology’. Observing, promoting and resisting social change: Perspectives from the Social Sciences. London School of Economics and Political Science, London, UK. Cockerton, C (18-23 July 2010) ‘Dreaming up ideas in synthetic Biology’. Living Matter Art, Research & Science Studies in Biological Laboratories, Summer School at KHM Academy of Media Arts, Cologne, Germany. Cockerton, C (26 August 2010) ‘Following Ideas and New Biological Forms in the International Genetically Engineered Machine Competition’. Annual Meeting of the Society for Social Studies of Science (4S), University of Tokyo, Tokyo, Japan. Cockerton, C (3 September 2010) ‘Dreaming up ideas in the International Genetically Engineered Machine Competition’. European Association for Studies of Science and Technology (EASST) Conference, ‘Practicing Science and Technology, Performing the Social’, University of Trento, Trento, Italy. Finlay, S (26 August 2010) Engineering biology or biologising engineering? Examining contemporary Synthetic Biology in its historical context. Annual Meeting of the Society for Social Studies of Science (4S), University of Tokyo, Tokyo, Japan. Fitzgerald, D (26 August 2010) Personhood, Sociality and the Neurobiology of Autism. Annual Meeting of the Society for Social Studies of Science (4S), University of Tokyo, Tokyo, Japan. Fitzgerald, D (2 September 20010) The Brain in Autism Research. European Association for Studies of Science and Technology (EASST) Conference, ‘Practicing Science and Technology, Performing the Social’, University of Trento, Trento, Italy. Franklin, S (20-22 May 2010) ‘Life After IVF: a feminist cultural account’, Keynote Address, Christina Institute, University of Helsinki, Helsinki, Finland. Franklin, S (1 June 2010) ‘Xenogenesis’, Trinity College, University of Cambridge, Cambridge, UK. Franklin, S (23-24 September 2010) “Rehumanism: or, humanism after humanism”, Invited paper, After Humanism, Oakley Center for the Humanities and Social Sciences, Williams College, Williamstown, USA. Friese, C (1 June 2010) “‘Let the domestics do the reproductive work for the endangered species’. Transposing domestic and endangered bodies in regenerative conservation”. Trinity Xenotransplantation Seminar, Trinity College, Cambridge University, Cambridge, UK. Friese, C (11 May, 2010) ‘Redistributing Endangered Animal Reproduction: Reimagining Evolution in Regenerative Conservation.’ Centre for Biomedicine and Society, King’s College London, London, UK.

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Publications, lectures and conference presentations continued… Friese, C (11 May, 2010) ‘Redistributing Endangered Animal Reproduction: Reimagining Evolution in Regenerative Conservation.’ Centre for Biomedicine and Society, King’s College London, London, UK. Jackson, E (July 2010 ) ‘Statutory regulation of PGD: unintended consequences and future challenges’ Brocher Foundation, Switzerland. Kabatoff, M (8 June 2010) ‘The Politics of No-Fly Lists: Passenger Data and Passenger Screening within the Context of Post 9/11 US border security’ LSE Sociology Forum, London School of Economics and Political Science, London, UK. Kabatoff, M (28 August 2010) ‘Technology, Search and the status of the Foreign National with Post 9/11 US Trans-national border security’. Annual Meeting of the Society for Social Studies of Science (4S), University of Tokyo, Tokyo, Japan. Marris, C (28-30 June 2010) ‘Synthetic biology in the UK: extending epistemic authority?’ Science and Democracy Network Meeting, Kavli Royal Society International Centre, Chicheley Hall, UK. Rose, N ‘Introduction’ (and chair) (Sep 13, 2010). Personhood in a Neurobiological Age, Brain, Self and Society concluding symposium, LSE, London, UK

Rose, N ‘Introduction’ (and chair) (Sep 14, 2010). Personhood in a Neurobiological Age’, Brain, Self and Society follow-on seminar, LSE, London, UK Singh, I (July 2010) Keynote Speaker ‘Can Technology Close the Opportunity Gap?: Neurotechnology in Education’. Gates Scholars Alumni Conference. University of Cambridge, Cambridge, UK. Singh, I (June 2010) Workshop Member: ‘Ethical Evaluation and Public Debate – neurological implants and human enhancement’. Oxford University, Oxford, UK. Singh, I (May 2010) Panelist (and Conference Organizer, with Walter Sinnott-Armstrong, Duke University), ‘Biomarkers and Prediction of Misbehavior: Social and Ethical Realities’. BioPrediction Conference. Washington, DC, USA. Singh, I (April 2010) Panelist, Neuroethics Challenges. Staying Sharp Programme. Royal Society, London UK. Zhang, J Y (31 July 2010) ‘The social tales of benches: Images and urban ethics’ Invited public lecture, Canon Communication Space, Canon Ltd (China), Beijing, China.

Upcoming BIOS events During term time, the BIOS research seminar series and BIOS reading group sessions are held regularly on Thursdays and Wednesdays respectively. The Thursday seminar series feature invited speakers to discuss their research on various social and ethical aspects of the life sciences and biomedicine, while the reading group facilitates discussion around a series of topics that are of interest to persons associated with BIOS or who have an interest in the life sciences throughout the LSE and beyond.

Seminar Series – details coming soon on lse.ac.uk/bios Workshops and Conferences 8-10 September 2010 Addiction(s) – Social and Cerebral Conference co-organised by the European Neuroscience and Society Network (ENSN) and ADDICTION 2007-10 Research Program (Academy of Finland), Majvik, Finland 13 September

Personhood in a Neurobiological Age, New Academic Building, LSE

23-24 September

Synthetic Biology and Open Source: Normative cultures of biology (by invitation only), New Academic Building, LSE

3-8 October 2010

ENSN NeuroSchool, University of Würzburg, Germany

7-8 December 2010

Neurosociety… What is it with the brain these days? Conference co-organised by the Institute for Science, Innovation and Society (InSIS) and the European Neuroscience and Society Network (ENSN), Oxford University

Roundtables and Reading Groups – details coming soon on lse.ac.uk/bios During term time, the BIOS reading group, and BIOS roundtable sessions are held regularly on Wednesdays. These moments are crucial to the academic life at BIOS, they facilitate discussion around a series of topics that are of interest to persons associated with BIOS, and allow everybody in BIOS to present their work and receive useful comments from their colleagues. BIOS • The London School of Economics and Political Science • Houghton Street London WC2A 2AE Tel: +44 (0)20 7955 6998 Fax: +44 (0)20 7955 6565 www.lse.ac.uk/collections/BIOS

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BIOS Reading Group The Reading Group will be meeting one Wednesday per month from 1-3pm. Check the BIOS website for an updated Michaelmas Term programme, room details and reading list. BIOS Roundtables BIOS roundtables will re-start as usual in the Michaelmas Term aiming at exploring shared interests in the BIOS community, and to address problems, issues, and concerns encountered. See BIOS Sharepoint for dates and to sign up!

BIOS N News Issue 16 • Michaelmas 2010

BIOS News Issue 16. Michaelmas 2010  

BIOS News Issue 16. Michaelmas 2010

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