Abstract
Through individualised genomic knowledge and the digital tools of telemedicine, personalised treatments may be able to solve the “irresolvable” conflict between the evidence-based and person-centred medicine movements. The aim of this chapter is to offer a framework for future work concerning these developments. As indispensable human elements are often rendered invisible with these technologies, expertise is critical. Furthermore, it is important to consider the unpredictable and transformative effects of materialities and, consequently, how expertise travels. The pursuit of analytical work without acceptance of the general and often abstract polarisation between evidence and persons in internal medical debates requires acknowledgement of both the distribution of expertise and influence (e.g., the governance of expertise). Finally, hybrids of humans and non-humans are ubiquitous but require scrutiny. That is, the affordance of technologies that embody, enclose and translate expertise in new forms has reconfiguring effects on the roles of experts and physician-patient relationships.
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Notes
- 1.
The more generic and all-embracing term is likely personalis(z)ed medicine; see, for example, Singer 2010; Bourret 2005; Hedgecoe 2006; Hedgecoe and Martin 2003; Mezzich et al. 2011; Paci and Ibarreta 2009. For reasons of brevity and to provide a contrast to the concept of person-centred medicine, we frequently use the abbreviated form PPPM.
- 2.
The concept of telemedicine is not easily defined: see, for example, Oudshoorn 2012. Sood et al. (2007) reviews one hundred different definitions that have been proposed since the 1970s and that range from surgical robotics to emails. Some authors have suggested that the concept of telemedicine should be replaced by (or at least incorporated into) the notion of e-health, partly due to the many failures of what we often associate with the traditional initiatives of telemedicine. However, as Petersson 2011, p. 86), writes, “[e]ven though telemedicine seems to live a dangerous life, this should by no means be interpreted as the abolishing of the dream to improve healthcare by the use of distance bridging technology. There is an endless stream of technologies brought forward to accomplish increased quality of care by rationalization through ICT, but they go, today, under other names and are framed somewhat differently such as telecare, taking these ICT’s outside of the hospital into people’s homes and out of the territory of medicine into the turf of care, the use of the general concept of IT to involve also administration and management, and e‐health (rarely called a technology) to point to the need to prevent people from abusing healthcare resources by making sure they live a healthy life and keep themselves updated on their health on‐line”. The notion of e-health is defined even more broadly than telemedicine and is associated with electronic health records, consumer health informatics, health knowledge management and healthcare information systems, as well as traditional telemedicine. In a review that identifies 51 unique definitions of e-health, Oh et al. 2005 refer to the work of Ludwig Wittgenstein and suggest that there is a rather clear understanding of what e-health is but that it is difficult or even impossible to provide a proper definition in words. An overview of an entire range of self-management tools, a typology of differing device complexities and a discussion of four forces that influence the rapid development of a new market (clinical care, economics and politics, consumerism, and technological innovation) is found in Barrett 2005.
- 3.
- 4.
See, for example, the EC workshop in Brussels 2011-05-13/14 on European Perspectives on Personalised Medicine: http://ec.europa.eu/research/health/events-06_en.html; the EC workshop on Biomarkers for Patient Stratification—2010-06-10/11, http://ec.europa.eu/research/health/pdf/biomarkers-for-patient-stratification_en.pdf; and the earlier workshop on —“omics” in Personalised Medicine—2010-05-29/30, http://ec.europa.eu/research/health/pdf/summary-report-omics-for-personalised-medicine-workshop_en.pdf.
- 5.
The notion of expertise has a long history within STS and has been discussed in various ways. For human’s expertise in relation to artificial intelligence (AI), see Collins and Kusch 1998. This discussion has clear connections to the dispute between pure sociological accounts for explaining the production of scientific knowledge and accounts that leave analytical space for the agency of materiality and technology so that the technoscientific process can be understood. For a review and an attempt to resolve the dispute with a specific definition of the concept of co-production, see Jasanoff 2004; see also Bloor 1999a; Bloor 1999b; Callon and Latour 1992; Collins and Yearley 1992a, b; Pickering 1992; Woolgar 1992. However, this discussion should not be confused with the more philosophical discussion of AI, for which John Searle’s (Searle 1980) Chinese example is a common reference. For philosophical accounts of AI, also see Boden 1996; Cole 2009; Searle 1999; Dreyfus et al. 1986.
One other aspect of the notion of expertise relates more to the role of STS and the relation to their objects of study. The debate commenced after Collins and Evans 2002, argued that when studying an area of research, the researchers within STS acquire different forms of expertise: The more we study an issue or field, the more knowledge we gain about it. In addition, they presented a method for measuring expertise, including the expertise both of researchers within a field and of the researcher studying that very field. Furthermore, it was suggested that the expertise of STSers could be of importance for the objects of study or for the politicians who address the uncertain knowledge claims of various experts. By using this framework, it would be possible to determine who is a proper expert and who is not. Collins and a few associates have continued this research: Collins 2004, 2007, 2009, Evans and Collins 2007; Collins and Evans 2007; Selinger and Crease 2006.
- 6.
- 7.
Concerning the focus on affordance in the threefold framework we owe great thanks to Mats Fridlund at the Department of Philosophy, Linguistics and Theory of Science, University of Gothenburg, who was instrumental in bringing the notion to the centre of our attention.
- 8.
In these early discussions of affordance, scholars use examples of artefacts and technologies to make their argument; we want to stress that affordance should not be understood only in these terms. When we use the notion of technology vis-à-vis affordance and expertise, the point of departure is a more contemporary meaning of the concept found in STS; here, it is often used in the context of sociotechnical ensembles in which the stability, materiality, hardness or even existence of technologies are more or less open-ended (see, e.g., Latour 1999). Also see Gibson 1979, p. 129.
- 9.
This analysis is simplified due to matters of space and clarity of argument. To take the most explicit example, even if pharmaceutical companies must produce revenues for their owners, it is no easy task, with millions in developing expenditures and the always present possibility that new products will fail in one manner or another (Bragesjö and Hallberg 2011). It has even been suggested that the problem in the pharmaceutical sector is so severe that political actions are needed to support the industry, such as lower taxation or the requirement of pre-written contracts between healthcare providers and a company for the use of a technology under development.
- 10.
- 11.
Please note the difference between “person-centred” and “personalised” medicine/care.
References
Barrett, B. J. (2005). Patient self-management tools: An overview. Oakland: California Healthcare Foundation. Available http://www.chcf.org/publications/2005/06/patient-selfmanagement-tools-an-overview. Accessed 18 March 2012.
BCC Market Research. (2009). Personalized medicine: Technologies and the global market report PHM044B. (Press Release).
Bergen, D., Hutchinson, K., Nolan, J. T., & Weber, D. (2010). Effects of infant-parent play with a technology-enhanced toy: Affordance-related actions and communicative interactions. Journal of Research in Childhood Education, 24, 1–17.
Bird, A. (2011). What can philosophy tell us about evidence-based medicine? An assessment of Jeremy Howick’s the philosophy of evidence-based medicine. International Journal of Person Centered Medicine, 1, 642–648.
Bloomfield, B. P., Latham, Y., & Vurdubakis, T. (2010). Bodies, technologies and action possibilities when is an affordance? Sociology-the Journal of the British Sociological Association, 44, 415–433.
Bloor, D. (1999a). Anti-latour. Studies in History and Philosophy of Science, 30, 81–112.
Bloor, D. (1999b). Reply to Bruno latour. Studies in History and Philosophy of Science, 30, 131–136.
Boden, M. A. (1996). The philosophy of artificial life. Oxford: Oxford University Press.
Bohlin, I., & Sager, M. (2011). Evidensens många ansikten: evidensbaserad praktik i praktiken [The many faces of evidence: evidence-based practice in practice]. Lund: Arkiv Förlag.
Bourret, P. (2005). BRCA patients and clinical collectives: New configurations of action in cancer genetics practices. Social Studies of Science, 35, 41–68.
Bragesjö, F., & Hallberg, M. (2011). Dilemmas of a vitalizing vaccine market: Lessons from the MMR vaccine/autism debate. Science in Context, 24, 107–125.
Brown, N., & Webster, A. (2004). New medical technologies and society. Cambridge: Polity Press.
Callon, M., & Latour, B. (1992). Don’t throw the baby out with the bath school! A reply to collins and yearley. In A. Pickering (Ed.), Science as practice and culture (pp. 343–368). Chicago: University of Chicago Press.
Camacho, N., Landsman, V., & Stremersch, S. (2009). The connected patient. In S. Wuyts, M. Dekimpe, E. Gijsbrechts, & R. Pieters (Eds.), The connected customer: The changing nature of consumer and business markets. London: Routledge.
Candlin, C. N. (2000). The Cardiff lecture 2000—reinventing the patient/client: New challenges to health care communication. Health Communication, http://www.cf.ac.uk/encap/resources/HCRC-candlinlecture.pdf. Accessed March 4, 2011.
Cartwright, L. (2000). Reach out and heal someone: Telemedicine and the globalization of health care. Health, 4, 347–377.
Chamberlain, J. M. (2010). Portfolio-based performance appraisal for doctors: A case of paperwork compliance. Sociological Research Online, 15. doi:10.5153/sro.2099
Chamberlain, J. M. (2011). Teaching and learning guide for: Regulating the medical profession: From club governance to stakeholder regulation. Sociology Compass, 5, 116–120.
Clarke, A. E., Shim, J. K., Mamo, L., & Shim, J. K. (2003). Biomedicalization: Technoscientific transformations of health, illness, and U.S Biomedicine. American Sociological Review, 68, 161–194.
Cole, D. (2009). The Chinese room argument. The Stanford Encyclopedia of Philosophy, September 22, 2009, http://plato.stanford.edu/entries/chinese-room/. Accessed April 4 2012.
Collins, H. M. (1992). Changing order: Replication and inducation in scientific practice (2nd ed.). Chicago: University of Chicago Press.
Collins, H. M. (2004). Interactional expertise. Phenomenology and the Cognitive Sciences, 3, 125–143.
Collins, H. M. (2007). Case studies of expertise and experience. Studies in History and Philosophy of Science, 38, 615–760.
Collins, H. (2009). We cannot live by scepticism alone. Nature, 458, 30–31.
Collins, H. M., & Evans, R. (2002). The third wave of science studies: Studies of expertise and experience. Social Studies of Science, 32, 235–296.
Collins, H. M., & Evans, R. (2007). Rethinking expertise. Chicago: University of Chicago Press.
Collins, H., & Kusch, M. (1998). The shapes of actions: What humans and machines can do. Cambridge MA: MIT Press.
Collins, H., & Yearley, S. (1992a). Epistemological chicken. In A. Pickering (Ed.), Science as practice and culture (pp. 321–326). Chicago: University of Chicago Press.
Collins, H., & Yearley, S. (1992b). Journey into space. In A. Pickering (Ed.), Science as practice and culture. Chicago: University of Chicago Press.
Collins, C. D., Purohit, S., Podolsky, R. H., Zhaoa, H. S., Schatzc, D., Eckenrodea, S. E., et al. (2006). The application of genomic and proteomic technologies in predictive, preventive and personalized medicine. Vascular Pharmacology, 45, 258–267.
Corburn, J. (2007). Community knowledge in environmental health science: co-producing policy expertise. Environmental Science and Policy, 10, 150–161.
Cornwall, A., & Shankland, A. (2008). Engaging citizens: Lessons from building Brazil’s national health system. Social Science and Medicine, 66, 2173–2184.
Croft, P., Malmivaara, A., & van Tulder, M. (2011). The pros and cons of evidence-based medicine. Spine (Phila Pa 1976), 36, E1121–E1125.
Dreyfus, H. L., Dreyfus, S. E., & Athanasiou, T. (1986). Mind over machine : The power of human intuition and expertise in the era of the computers. New York: Free Pres.
Edwards, P. (2010). A vast machine: Computer models, climate data, and the politics of global warming. Cambridge MA: MIT Press.
Edwards, P. N., Mayernik, M. S., Batcheller, A. L., Bowker, G., & Borgman, C. (2011). Science friction: Data, metadata, and collaboration. Social Studies of Science, 41, 667–690.
European Commission. (2007). Opinion on the ethical aspects of nanomedicine—report by the European group on ethis in science and new technologies to the EC, Brussels.
Evans, R., & Collins, H. M. (2007). Expertise: From attribute to attribution and back again. In E. J. Hackett, O. Amsterdamska, M. Lynch, & J. Wajcman (Eds.), Handbook of science and technology studies (pp. 609–630). Cambridge, MA: MIT Press.
Ford-Eickhoff, K., Plowman, D. A., & McDaniel, R. R. (2011). Hospital boards and hospital strategic focus: The impact of board involvement in strategic decision making. Health Care Management Review, 36, 145–154.
Gibson, J. J. (1979). The ecological approach to visual perception. Boston: Houghton Mifflin.
Golubnitschaja, O. (2010). Time for new guidelines in advanced diabetes care: Paradigm change from delayed interventional approach to predictive, preventive & personalized medicine. The EPMA Journal, 1, 3–12.
Grankvist, H. (2011). Making doable problems within controversial science: US and Swedish Scientists’ experience of gene transfer research. Dissertation, Linköping, Sweden: Linköpings University.
Hackett, E. J., Amsterdamska, O., Lynch, M., & Wajcman, J. (2007). The handbook of science and technology studies (3rd ed.). Cambridge, MA: MIT Press.
Hedgecoe, A. (2006). Pharmacogenetics as alien science: Alzheimer’s disease, core sets and expectations. Social Studies of Science, 36, 723–752.
Hedgecoe, A., & Martin, P. (2003). The drugs don’t work: Expectations and the shaping of pharmacogenetics. Social Studies of Science, 33, 327–364.
Hindmarsh, R., & Prainsack, B. (2010). Genetic suspects: Global governance of forensic DNA profiling and databasing. Cambridge: Cambridge University Press.
Holmes, D., Murray, S. J., Perron, A., & Rail, G. (2006). Deconstructing the evidence-based discourse in health sciences: truth, power and fascism. International Journal of Evidence Based Healthcare, 4, 180–186.
Jasanoff, S. (2004). States of knowledge : the co-production of science and the social order,: London: Routledge.
Jasanoff, S. (2011). Reframing rights: Bioconstituionalism in the genetic age. Cambridge, MA: MIT Press.
Jasanoff, S., & Kim, S. H. (2009). Containing the Atom: Sociotechnical imaginaries and nuclear power in the United States and South Korea. Minerva, 47, 119–146.
Johnson, E., & Berner, B. (2010). Technology and medical practice : Blood, guts and machines. Farnham: Ashgate.
Keller, E. F. (2000). The century of the gene. Cambridge, MA: Harvard University Press.
Kerr, A., Cunningham-Burley, S., & Tutton, R. (2007). Shifting subject positions—experts and lay people in public dialogue. Social Studies of Science, 37, 385–411.
Lane, J.-E. (2000). New public management. London: Routledge.
Latour, B. (1999). Pandora’s hope: Essays on the reality of science studies. Cambridge, MA: Harvard University Press.
Leonardi, P. M. (2011). When flexible routines meet flexible technologies: Affordance, constraint, and the imbrication of human and material agencies. MIS Quarterly, 35, 147–167.
Lofgren, H., & de Boer, R. (2004). Pharmaceuticals in Australia: Developments in regulation and governance. Social Science and Medicine, 58, 2397–2407.
Marcant, O. (2008). Research in social sciences and needs in expertise in the public policies: The example of the protection of water resources. ESSACHESS: Revue interdisciplinaire de sciences humaines et sociales (pp. 169–178).
Martin, P., Lewis, G., Smart, A., & Webster, A. (2006). False positive? The clinical and commercial development of pharmacogenetics. York: SATSUUniversity of Nottingham, University of York and IGBIS.
May, C., Mort, M., Williams, T., & Gask, L. (2003). Health technology assessment in its local contexts: Studies of telehealthcare. Social Science and Medicine, 57, 697–710.
May, C., Rapley, T., Moreira, T., Finch, T., & Heaven, B. (2006). Technogovernance: Evidence, subjectivity, and the clinical encounter in primary care medicine. Social Science and Medicine, 62, 1022–1030.
Mezzich, J. E., & Miles, A. (2011). The third Geneva conference on person-centered medicine: Collaboration across specialties, disciplines and programs. The International Journal of Person Centered Medicine, 1, 6–9.
Mezzich, J. E., Snaedal, J., van Weel, C., Botbol, M., & Salloum, I. (2011). Introduction to person-centred medicine: from concepts to practice. Journal of evaluation in clinical practice, 17, 330–332.
Miles, A., & Mezzich, J. E. (2011). Advancing the global communication of scholarship and research for personalized healthcare. International Journal of Person Centered Medicine, 1, 2.
Milewa, T. (2006). Health technology adoption and the politics of governance in the UK. Social Science and Medicine, 63, 3102–3112.
Moore, A. (2010). Public bioethics and public engagement: the politics of “proper talk”. Public Understanding of Science, 19, 197–211.
Mort, M., Finch, T., & May, C. (2009). Making and unmaking telepatients identity and governance in new health technologies. Science, Technology and Human Values, 34, 9–33.
Norman, D. A. (1988). The psychology of everyday things. New York: Basic Books.
Oh, H., Rizo, C., Enkin, M., & Jadad, O. (2005). What is eHealth (3): A systematic review of published definitions. Journal of Medical Internet Research, 7, e1. doi:10.2196/jmir.7.1.e1.
Oudshoorn, N. (2011). Telecare technologies and the transformation of healthcare. Basingstoke: Palgrave Macmillan.
Oudshoorn, N. (2012). How places matter: Telecare technologies and the changing spatial dimensions of healthcare. Social Studies of Science, 42, 121–142.
Paci, D., & Ibarreta, D. (2009). Economic and cost-effectiveness conditions for pharmacogenetics tests: An integral part of translational research and innovation uptake in personalized medicine. Current Pharmacogenetics and Personalized Medicine, 7, 284–296.
Pai, A. (2009). Genomic medicine in healthcare—the tip of the iceberg. Electronic Healthcare, 8, e1–e13.
Pálsson, G. (2002). Medical databases: The icelandic case. In S. Lundin & L. Åkesson (Eds.), Gene technology and economy. Lund: Nordic Academic Press.
Petersson, J. (2011). Medicine at a distance in Sweden: Spatiotemporal matters in accomplishing working telemedicine. Science Studies, 24, 43–63.
Pfaffenberger, B. (1992). Technological dramas. Science, Technology and Human Values, 17, 282–312.
Pickering, A. (1992). Science as practice and culture. Chicago: University of Chicago Press.
Royal Society (2005) Personalised medicines: hopes and realities. The Royal Society, September.
Runhaar, H. A. C., Van Der Sluijs, J. R., & Driessen, P. R. J. (2009). Shifts in environmental health risk governance: An analytical framework. Safety, Reliability and Risk Analysis: Theory, Methods, and Applications—Proceedings of the Joint ESREL and SRA-Europe Conference (p. 369).
Sager, M. (2006). Pluripotent circulations: Putting actor-network theory to work on stem cells in the US 1998–2001. Gothenburg: University of Gothenburg.
Salter, B., Gottweis, H., & Waldby, C. (2009). The global politics of human embryonic stem cell science: Regenerative medicine in transitio. Basinstoke: Palgrave.
Searle, J. (1980). Minds, brains, and programs. Behavioral and Brain Sciences, 3, 417–457.
Searle, J. R. (1999). Mind, language and society: Doing philosophy in the real world. London: Weidenfeld & Nicolson.
Selinger, E., & Crease, R. P. (2006). The philosophy of expertise. New York: Columbia University Press.
Singer, E. (2010). A vision for personalized medicine. Technology Review, http://www.technologyreview.com/biomedicine/24703/ Accessed March 9 2010.
Sismondo, S. (2004). An introduction to science and technology studies. Malden: Blackwell.
Sood, S., Mbarika, V., Jugoo, S., Dookhy, R., Doarn, C. R., Prakash, N., et al. (2007). What is telemedicine? A collection of 104 peer-reviewed perspectives and theoretical underpinnings. Telemedicine Journal and E-Health, 13, 573–590.
Stephanie, T. (2010). Comparing approaches towards governing scientific advisory bodies on food safety in the United States and the European union. Wisconsin Law Review, 627, 627–671.
Suchman, L. (2010). Moving nature/culture. In E. Johnson & B. Berner (Eds.), Technology and medical practice : Blood, guts and machines (pp. 203–208). Farnham: Ashgate.
Thevenot, L. (2009). Governing life by standards: A view from engagements. Social Studies of Science, 39, 793–813.
Torpy, J. M., Lynm, C., & Glass, R. M. (2009). JAMA patient page. Evidence-based medicine. JAMA, 301, 900.
Tweed, C. (2010). Exploring the affordances of telecare-related technologies in the home. In M. Schillmeier & M. Domènech (Eds.), New technologies and emerging spaces of care. Farnham: Ashgate.
van Essen, A. M. (2005). Theorising the political controversy on the emergence of new public management in Health care reforms. Conference paper given at The Network for European Social Policy Analysis: The Governance of Social Policy in the new Europe. April 1–2, 2005. University of Bath.
van Essen, A. M. (2009). Seeking a balance?! The emergence of new public management in new hospital payment systems in Germany, the Netherlands and the United Kingdom. Dissertation, Vrije Universiteit, Amsterdam.
Vedung, E. (2010). Four waves of evaluation. Evaluation, 6, 263–277.
Webster, A. (2006). New technologies in health care: Challenge, change and innovation. Gordonsville: Palgrave Macmillan.
Weimer, D. L. (2010). Stakeholder governance of organ transplantation: A desirable model for inducing evidence-based medicine? Regulation and Governance, 4, 281–302.
Wilkinson, K., Lowe, P., & Donaldson, A. (2010). Beyond policy networks: Policy framing and the politics of expertise in the 2001 foot and mouth disease crisis. Public Administration, 88, 331–345.
Willems, D. (2000). Managing one’s body using self-management techniques: Practicing autonomy. Theoretical Medicine and Bioethics, 21, 23–38.
Woolgar, S. (1992). Some remarks about positionism: A reply to Collins and Yearley. In A. Pickering (Ed.), Science as practice and culture (pp. 327–342). Chicago: University of Chicago Press.
Yearley, S. (2005). Making sense of science: Understanding the social study of science. London: Sage.
Zuiderent-Jerak, T. (2007). Standardizing healthcare practices. Experimental interventions in medicine and science and technology studies, Dissertation, Erasmus University, Rotterdam.
Zuiderent-Jerak, T. (2009). Competition in the wild: Reconfiguring healthcare markets. Social Studies of Science, 39, 765–792.
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This research is supported by grants from The Swedish Research Council (2005-2373 and 2007-1633). We are also deeply in debt for the continuous support from Kristian Wasen.
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Sager, M., Bragesjö, F., Elzinga, A. (2013). A Framework for Future Studies of Personalised Medicine: Affordance, Travelling, and Governance of Expertise. In: Wasen, K. (eds) Emerging Health Technology. SpringerBriefs in Health Care Management and Economics. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-642-32570-0_5
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