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Activities during 2005

Science & Technology Governance

Sociology of the Biosciences

Mobilities, Informatics & Space and Technology Studies Unit

Department of Sociology

www.york.ac.uk/org/satsu

© January 2006 SATSU,

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Director Prof Andrew Webster [email protected]

Research Fellows Dr Nik Brown (Deputy Director) [email protected]

Cowside Beck Valley, Yorkshire Dales Dr Lena Eriksson [email protected] National Park. Mr Conor Douglas (from Feb 2005) [email protected] Dr Graham Lewis [email protected] Dr Paul Rosen [email protected] Dr Darren Reed [email protected] Dr Brian Woods [email protected]

Research Students Luke Cowie [email protected] Helen Cox [email protected]

Blakey Ridge, North York Moors Na- Conor Douglas [email protected] tional Park (Site of Special Scientific Interest) Oh Min Kwon [email protected] Maria Eugénia Rodrigues [email protected]

Affiliated Research Fellows Prof Roger Burrows (University of York) Dr John Forrester (University of York) Prof Herbert Gottweiss (University of Vienna) Dr Anne Kerr (University of York)

York Cemetery (butterfly walk) Dr Paul Martin (University of Nottingham) Prof Mike Michael (University of London) Dr Annemiek Nelis (University of Amsterdam) Dr Brian Rappert (University of Exeter) Prof Arie Rip (University of Twente) Dr Richard Tutton (University of Nottingham) Dr Peter Wright (University of York) Prof Steven Yearley (University of York) (until Sep 2005)

Administration Staff

Yorkshire sandwort on Sulber Common, Stephanie Gant [email protected] Ingleborough National Nature Reserve. Luana Pritchard [email protected] (Site of Special Scientific Interest)

Photo Credits: Peter Wakely/English Nature—except Cowside Beck Valley, Peter Glendall/English Nature

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Activities During 2005

The Science and Technology Studies Unit specialises in understanding the complex dynamics of change in contemporary S&T networks. SATSU has sought to explore the socio-technical co-construction of knowledge, artefacts and public policy.

The Unit was initially established in the late 1980s to critique public/private links between university and industrial actors. In subsequent years, the SATSU portfolio has expanded considerably to encompass a widening field of critique applied to technology and science.

This document provides a brief overview of SATSU’s work during 2005

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2005 Director’s Introduction This past year saw the arrival of a number of new and Strategic Management due out in 2006. Brian colleagues to the Unit, two Research Fellows, Woods has completed, with Nick Watson, a major Lena Eriksson, who had recently completed a text on the history of wheelchair design, and is postdoc at Cardiff, and Conor Douglas from Van- now engaged on a new ESRC grant relating to couver. Lena is working on stem cell standards food allergies. and Conor on the Department of Health project The Unit has been in detailed discussion through- on pharmacogenetics. Both continue the Unit’s out the year with other Departments, notably Bi- tradition of broad international membership, as ology, and has been developing collaborative re- have the visiting Marie Curie Fellows who joined search proposals relating to stem cells, tissue en- us this year. We had four Fellows in residence and gineering, and the ‘future of medicine’, most of sadly the programme has now come to an end. It which should come to fruition in 2006. has been a great success and one that will pay dividends in the long term through continuing re- The new MSc programme got off to a good start search links with these European scholars. Darren and we are hoping to recruit additional numbers Reed with whom we had been working in 2004 next year. formally joined the Unit as full time Research Fel- The Director has been especially busy this year low and brings new skills with respect to lan- not only ensuring the Unit continues to prosper, guage, interaction and technology design espe- but also with colleagues Stephanie and Luana, cially in informatics. We also saw the arrival of completing the final year of the very successful two new PhD students, Helen Cox, ex-NHS, and Innovative Health Technologies programme, while Oh Min Kwon from South Korea to join our exist- establishing and now directing a new ESRC initia- ing doctoral candidates Eugenia and Luke, and a tive on stem cells that will run through to 2009. long term Visiting Fellow from China, Juren Lin, Unexpectedly, he was also asked to become Head who has been busy translating Mike Mulkay’s of Department of Sociology in April and has had work over the past few years and is here to get to an extremely busy time since then with new staff- know the ‘York School’ more closely. ing and programmes as part of the University’s

The Unit continues to consolidate its work in bio- overall expansion plans. He was pleased to learn with a cluster of projects on pharmaco- towards the end of the year that he had been genetics and stem cells, and its interests in infor- elected Academician of the Learned Society for matics within the transport field and more re- Social Sciences. cently through liaison with our Associate Research Fellow, Roger Burrows, neighbourhoods and iden- Prof. Andrew Webster tity; in addition, science policy work is pursued through the PRIME network and work on regula- tion, while Nik Brown’s analysis of expectations and futurity continues to develop, not least through an extremely valuable international work- shop SATSU hosted on this topic in July, and a special issue of the journal Technology Analysis

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Core Research Areas

SATSU’s key intellectual strengths lie in three related fields of enquiry, each of which serves as a basis of empirical research activity:

Science and Technology Governance Work in the Unit seeks to understand how it is that developments in science and technology become objects for governance, both formally through policy-making and indirectly in terms of the govern- ance of innovation. A number of activities contribute to this theme:

• Quality assured science: the role of standards in stabilising stem cell research Funding: ESRC. Status: Continuing. Contact: Lena Eriksson.

• PRIME (Policy Research in the Move Towards a European Research Area) Funding: European Commission. Status: Continuing. Contact: Andrew Webster.

• ITEMS - (Identifying Trends in European Medical Space) Funding: European Commission. Status: Continuing. Contact: Andrew Webster.

Sociology of the Biosciences The Unit has maintained a consistent and sizeable research portfolio on the biosciences, with projects on pharmacogenomics, tissue engineering, stem cells, and xenotransplantation.

• Haematopoietic Stem Cells: The Dynamics of Expectations in Innovation Funding: ESRC. Status: Continuing. Contact: Nik Brown.

• Variability in response to warfarin: a prospective analysis of pharmacogenetic and environmental factors Funding: Department of Health. Status: Continuing. Contact: Graham Lewis.

• Pharmacogenomics, diagnostic tests and clinician acceptance Funding: ESRC. Status: Continuing. Contact: Graham Lewis.

• Pharmacogenetics and pharmacogenomics: State-of-the-art and potential socio-economic impact Funding: European Commission. Status: Completed. Contact: Graham Lewis.

Mobilities, Informatics and Space SATSU has a continuing research interest in the spatial reorganisation of social life arising in the con- text on new Information and Communication Technologies (ICTs) including:

• Time, Dependability and Trust Funding: EPSRC. Status: Continuing. Contact: Darren Reed.

• Sorting Places Out – Classifications and its Consequences in an E-Society Funding: ESRC. Status: Continuing. Contact: Brian Woods.

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Research Grants and Funding Sorting Places Out? Classifications and its scientists to examine the development of Embry- Consequences in an E-Society ESRC E- onic Stem Cells (ESC) research and innovation, Society Programme, £97,858 (2004-2006). The specifically with regard to establishing new qual- project looks at the use of IT based marketing ity control and safety standards, developed and systems for classifying neighbourhoods, exploring overseen by intermediary institutions. Such insti- the way in which ICTs are increasingly playing a tutions bridge between the science base and role in the zoning and categorization of space. clinical and commercial arenas and work to stabi- Contact: Brian Woods or Roger Burrows. Collabo- lise the present and enable the future develop- rators: Nicholas Gane (Brunel University), Nick ment of the field. Contact: Andrew Webster or Ellison and Simon Parker (University of Durham), Lena Erikkson. Collaborators: Peter Andrews & and Michael Hardy (University of Newcastle- Harry Moore (University of Sheffield). upon-Tyne). Pharmacogenomics, diagnostic tests, and BLISS - Constructing public confidence in clinician acceptance: ESRC Science in Society ICT systems: time, dependability and trust programme, £158,000 (2004-2006). The study ESRC/EPSRC, (2004-2006). This project exam- examines the extent to which doctors are likely ines dependability/trust relations and how these to incorporate pharmacogenomics into clinical relate to the temporal properties of ICT systems practice, and analyses the factors influencing up- in public environments, specifically a real-time take, focusing on cancer, asthma, cardiovascular information for managing and using public (bus) disease, psychiatry and general practice, and ex- transport. Contact: Darren Reed, Nik Brown or plores the role that public health systems are Andrew Webster. Collaborators: Julian Hemper- having on introduction. In broader terms, the re- son (ACIS), Peter Edwards (First Group) Darren search will help us understand ways in which in- Capes (City of York Council), Peter Wright and novation occurs and new medical technologies Andrew Monk (University of York). become embedded in doctors’ practice. Contact: Graham Lewis. Collaborators: Andy Hall Haematopoietic Stem Cells: The dynamics (Northern Institute for Cancer Research, Univer- of expectations in innovation ESRC, sity of Newcastle). Details at: http//www.york.ac. £229,895 (2004-2007). The project builds on uk/res/pgx/ work in the Unit and elsewhere on the ‘dynamics of expectations’ in science and technology inno- Variability in response to warfarin: a pro- vation – and in this case looks at the changing spective analysis of pharmacogenetic and perspectives on the future of HSCs for treating environmental factors Department of Health, cancer (since the 1950s) and now their use in re- £842,000 (2004-2007). This large-scale prospec- generative medicine. Contact: Nik Brown. Col- tive study on pharmacogenetics will determine laborators: Paul Martin and Alison Kraft the complex factors affecting patient response to (University of Nottingham), Arie Rip (University warfarin, a widely used anti-coagulant drug, in of Twente) and Joan Fujimura (University of Wis- order to develop an improved prescribing algo- consin, Madison). rithm and cost effectiveness data. The SATSU component is analysing the views and experi- Quality assured science: the role of stan- ences of patient and clinical staff with regard to dards in stabilising stem cell research, introduction of pharmacogenetics into the clinical ESRC, £120,000 (2004-2006). This interdiscipli- setting, helping to identify how this technology nary project brings together social and bio- might be introduced into “real world” clinical

5 www.york.ac.uk/org/satsu situations, the extent of likely demand and up- the networks involved in stem cell innovation us- take, and therapeutic areas most likely to produce ing mesenchymal stem cells. This forms part of health benefits. Contacts: Graham Lewis, Andrew ongoing work on the ‘dynamics of expectations’ in Webster, and Conor Douglas. Collaborators: Munir different innovation contexts. Contact: Nik Brown. Pirmohamed, Dyfrig Hughes, Kevin Park Cheng Collaborators: Paul Genever (PI – University of Hok Toh, Tom Walley, Paula Williamson York) plus international partners. (University of Liverpool), David Bentley, Panos Food Allergies: Constructing a Sociological Deloukas and Jane Rodgers (Sanger Institute, Agenda. ESRC, £159,256 (2005- 2008). Allergies Cambridge), Ann Daly and Farhad Kamali are becoming a salient feature of contemporary (University of Newcastle upon Tyne), David Fitz- life, and there is a growing body of research ex- maurice (University of Birmingham), and Vanessa ploring their medical, genetic and environmental Martlew (Royal Liverpool and Broadgreen Univer- causes. However, there is a relative dearth of sity Hospital Trust). Details at: http//www.york. studies which have explored the social implica- ac.uk/res/pgx/ tions and consequences of the rise in allergies. Pharmacogenetics: state-of-the-art and po- This research focuses on food allergies and food tential socio-economic impacts European Sci- intolerance. We know very little about how lay ence and Technology Observatory/Institute for and professional people define or explain food al- Prospective Technological Studies, (2004-2005). lergies and intolerance, how people live with The research examined regulatory frameworks for them, or how those who cater for people's food pharmacogenetics in Europe, USA and Japan, part and health needs in a variety of institutional set- of a wider European Commission study analysing tings manage this growing problem. This project the current state of pharmacogenetics develop- is exploring these issues and in so doing develop- ment and clinical incorporation from a European ing a sociological understanding of how food aller- perspective. Contact: Graham Lewis. gies are defined, negotiated and managed. Con-

tact: Brian Woods. Collaborators: Sarah Nettleton, I~Design – Sociological and Psychological Roger Burrows (University of York), and Anne issues for inclusive design EPSRC, (2004- Kerr (University of Leeds). 2006). The i~design project seeks to provide tools to improve quality of life for the wider population. Attitudes about Science and Technology It focuses on enabling industry to design products (AASAT) (2005—2006). Funded by the World- that can be used effectively by the population as wide University Network (WUN) and ESRC Inno- a whole, including those who are older or dis- vative Health Technologies programme, this pro- abled. The York aspect concerns itself with social ject analyses the formation of (‘public’) opinion on and psychological issues, and the development of controversial sciences across cultures—namely the conception of inclusive design. Contacts: Dar- stem cell research and sciences surrounding bio- ren Reed, Andrew Monk. Collaborators: John terrorism in the US and UK. Qualitative research Clarkson (), Roger Cole- at York and the University of Wisconsin—Madison man (RCA), Alan Newall (University of Dundee). will act as a platform for a larger quantitative sur-

vey. This multi-methodological approach is novel Mesenchymal Stem Cells – An analysis of within public understanding of science research. expectations, prospects and potential Euro- Other partners are University of Illinois at Urbana- pean Commission (Osteocord), 2.5m euro (2005- Champaign and University of Washington. Con- 2008). As part of the much larger international tact: Conor Douglas. ‘Osteocord’ project led by colleagues in the De- partment of Biology at York, SATSU is analysing (Continued on page 11)

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Activities during 2005 Innovation in Britain was Under State Control, Technology and Disability, 17, 4, 237-250.

Publications Reports and Working Papers Lewis, G. (with Hopkins, M. M., Gaisser, S., Ryan, Chapters J., Enzing, C., Hartig, J., Vullings, W., and Forde, Nik Brown T.), Regulatory and quality assurance frameworks Brown, N. (2005) Encyclopaedia of 20th-Century for PGx: A comparative study of the US, EU and Technology, 3 chapters, London, Routledge. four EU member states. Part 3 of An ESTO study Brian Woods on Pharmacogenetics and Pharmacogenomics: Woods, B. Watson, N. (2005) ‘Wheelchair, His- State of the art and social and economic impacts. tory of,’ in Encyclopaedia of Disability, Thousand Institute for Prospective Technological Studies Oaks, Sage. (IPTS)/European Science and Technology Obser-

vatory (ESTO)/European Commission, 2005. Journal articles Nik Brown Woods, B. (with Burrows, R. Gibson, N.) (2005) Michael, M. and Brown, N. (2005) On Doing Sci- Neighbourhoods on the Net: The Nature and Im- entific Citizenships: Reflections on Xenotransplan- pact of Internet-Based Neighbourhood Informa- tation's Publics, Science as Culture, 14, 1, 39-57. tion Systems, The Policy Press, Bristol.

Conor Douglas Rodrigues, M. E & Machado, H (eds) (2005) Douglas, C.M.W. (2005) Managing HuGE Expec- ‘Scientific Proofs and International Justice: the tations: Rhetorical Strategies in Human Genome future for scientific standards in global Epidemiology, Science Studies, 18, 2, 26-45. environmental protection and international trade’,

Conference proceedings. Universidade do Minho/ Darren Reed NES, Portugal. Ashmore, M. and Reed, D. (2005) Innocence and Nostalgia in Conversation Analysis: The Dynamic Selected Conference Papers & Relations of Tape and Transcript, Special Issue on Presentations Qualitative Social Research, Historical Social Re- Nik Brown search (Historische Sozialforschung), 30 (1). Home on the mid-range, invited speaker, interna- Andrew Webster tional workshop, 'Mid Range Theories in STS', Uni- Webster, A. (2005) Social science and a post- versity of Amsterdam, April 2005. genomic future: alternative readings of genomic Blood Futures - capitalising haematopoietic stem agency, New Genetics and Society, 24, 2, 226-38. cells, invited speaker, IGBiS, University of Notting- Brian Woods ham, April 2005. Watson, N. Woods, B. (2005) No wheelchairs be- The aestheticisation of futurity - from facts to val- yond this point: A historical examination of wheel- ues - authority to authenticity, Invited Plenary chair access in the Twentieth Century in Britain Speaker, International Conference of Postgradu- and America, Social Policy & Society, 4, 1, 97-105. ate Graduate College, 'Technisierung/ Watson, N. Woods, B. (2005) The Origins and Asthetisierung - Technological and Aesthetic Early Developments of Special/Adaptive Wheel- Transformations of Society', Darmstadt University, chair Seating, Social History of Medicine, 18, 3, Germany, Oct 2005. 459-474. (Continued on page 8) Woods, B. Watson, N. (2005) When Wheelchair

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(Continued from page 7) in Science and Technology, Office of Science and Governing hybrids - regulatory species boundary Technology, Department of Trade and Industry, change in xenotransplantation and tissue engi- London, 12 May 2005. neering, Invited Plenary Speaker, 8th Interna- UK delegate, OECD, An International Perspective tional Xenotransplantation Congress, Gothenburg, on Pharmacogenetics: The Intersections Between Sweden, Oct 2005. Innovation, Regulation, and Health Delivery. Invited Visiting Lecturer at the School of Public Rome, 17-20 October, 2005. Health, University of Copenhagen, Denmark, Oct Invited participant, US National Cancer Institute 2005 (three public lectures and participation in Symposium: International Harmonization of Biore- School's symposium on the sociology of stem cell pository Practices, Washington DC, 10 Nov, 2005. innovation). Invited delegate, IBM Healthcare and Life Sci- Conor Douglas ences Conference, Focus on Cancer: 2005 World- Mediating and Translating Patients’ Experiences in wide Biobank Summit IV, Washington, DC, No- a Genetic Era: Introductory Thoughts and a Pro- vember 8-9, 2005. spective Typology, Postgraduate Forum on Genet- ics & Society, Annual Meeting, Cardiff, Sep 2005. Pharmacogenomics: Delivery to patients and ac-

ceptance. Pharmacogenomics E-Symposium, In- Managing HuGE Expectations: Rhetorical Strate- vited Moderator and Panelist, International Web gies in Human Genome Epidemiology, Postgradu- Conference and Annual Meeting of the Interna- ate Forum on Genetics and Society Regional tional Society of Pharmacogenomics (ISP), broad- Meeting, York, Dec 2005. cast live 12 Dec 2005, archived at http://www. Lena Eriksson pgx.e-symposium.com Inside or Outside the Bio-Science Tent? Invited Darren Reed Speaker, ESRC Science in Society programme, an- Learning from Loseables Home Oriented Informa- nual meeting, Crewe, Jan 2005. tion Technology (HOIT), York, 13-15 April, 2005. WUN Global Exchange. Developing Risk Initiative Less is Loseable: Metonymy, Pastiche and the Use and Building Stem Cell Project Collaboration, with of Literary Devices for a Critical Reflexive Practice, University of Wisconsin-Madison. Less is More, Microsoft, Cambridge, 25 April (with Graham Lewis Blythe, M.). Pharmacogenetics, industry strategies and the Critical Perspectives On Dependability in the promise of personalised medicine, Invited session Home, Critical Computing Denmark, Aug 2005 organiser/chair, Innogen International Confer- (with Blythe, M., Wright, P. and Monk, A.). ence, ELSIS Evolution of the Life Science Industry Sectors, Edinburgh, 23-25 Feb, 2005. Sociological and Psychological issues and Inclusive

Design: beyond functional acceptability (early Variability in response to warfarin: A prospective thoughts), Workshop on User Sensitive design, analysis of pharmacogenetic and environmental Accessible Design in the Digital World, Dundee, factors, Poster presentation. HYMS Research Con- 23-24 Aug 2005. ference, York, 10 March 2005 (with Webster, A., Douglas, C. and Pirmohamed, M.). Borders and Appropriations in the relations be-

tween HCI and STS, Workshop on Reflexive Meth- Pharmacogenomics, diagnostic tests, and clinician ods, Pasadena, 20-22 Oct 2005. acceptance, invited paper, ESRC Science in Soci- ety programme, Workshop on Public Engagement (Continued inside back cover)

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(Continued from page 8) (Continued from page 6) Maria Eugenia Rodrigues Research Graduates Universal protection or global depletion? Hopes Luke Cowie Thesis title: Medicine: its meaning, and contradictions in a science-led society, Inter- management and value. national Seminar Scientific Proofs and Interna- tional Justice: the future for scientific standards in Helen Cox Thesis title: The implications of the global environmental protection and international new genetics on professional networks and the trade, University of Minho, Portugal, April 12. structuring of health delivery.

Andrew Webster Conor Douglas Thesis title: Exploring the co- Genomics, public health and innovation, Evolution construction of patients and new medical tech- of the Life Sciences Industries, Innogen Interna- nologies. tional Conference, Edinburgh, Feb 2005. Oh Min Kwon Thesis title: Traditional Korean Pan-european and individual national perspec- medicine as a visual culture. tives: developing a unified European regulatory Maria Eugénia Rodrigues Thesis title: Science, approach? Keynote presentation. Second Interna- New Technologies and the Publics: the Environ- tional Conference on Tissue Engineering, Herak- mental Monitoring Systems. lion, Crete, May 2005. SATSU – Marie Curie Training Site ELSA research and genomics: the ‘impact on New Genetics/New Society ‘what’? Genomics and Society, Cesagen Interna- tional Conference, Royal Society, London, 2005. Marie Curie Training Site 2005 saw completion of SATSU’s role as an EU Marie Curie Training site Understanding innovative health technologies: for scholars interested in the social and cultural where does their novelty lie?, Invited international aspects of developments in genetics and molecular seminar series, University of Twente, Netherlands, biology. The award provided a total of 74 months Nov 2005. of graduate research training and supervision for Brian Woods 15 researchers from several member states.

The history of the ultra-lightweight wheelchair, Marie Curie Research Fellows in 2005 Enabling the Past: New Perspectives in the History Ingrid Metzler – University of Vienna, Austria. of Disability, Centre for the History of Science, Technology and Medicine, University of Manches- Nete Schwennesen – University of Copenhagen, ter, June 17–19, 2005 (with Watson, N.). Denmark.

Sakari Tamminen – University of Helsinki, Finland.

Niki Vermeulen – University of Twente, The Netherlands.

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Medical technologies are increasingly at the centre of new changes in both the social and physical body. This MSc is designed for those with an inter- est in the sociology of medicine and healthcare.

The course covers a wide range of sociological and anthropological literature on medical innovation with a special focus on the body, reproduction, health, ageing and dying. Crucially, it applies social science research to healthcare organisation, policy and regulation. The course is for sociology gradu- ates and healthcare practitioners interested in the social science of medicine.

Its primary aims are: • to explore key perspectives in the Sociol ogy of Health and Illness, Anthropol- ogy, History of Medicine, and Science and Technology Studies

• to provide a rigorous foundation in social science research drawing on a range of approaches which are broadly transferable

• to provide a rigorous training for further research and professional development

Contacting SATSU SATSU welcomes collaboration with scholars of Science and Technology Studies worldwide. Please visit the SATSU website at: www.york.ac.uk/org/satsu/ for up to date information on our activities, or con- tact us directly using the addresses below.

Prof Andrew Webster Dr Nik Brown Director of SATSU Deputy Director of SATSU Department of Sociology Department of Sociology University of York, YO10 5DD UK University of York, YO10 5DD UK +44 (0)1904 434740 +44 (0)1904 434741 [email protected] [email protected]