Personalised and Precision Medicine: What Kind of Society Does It Take?

  • Barbara Prainsack


A decade ago, personalised medicine was largely synonymous with the matching of drug therapies to the genomes of individual patients. Since then, it has become a more inclusive term referring to the consideration of individual characteristics—molecular and otherwise—to improve medical research and practice. In this chapter I explore what goals and values underpin current iterations of personalised medicine. An important such goal is comprehensive individual digital data capture: having as much information as possible about the bodies, lives, and environments of individuals is increasingly seen as necessary to reach the goal of personalisation. This, in turn, requires the cooperation of patients who contribute information, time, and self-monitoring efforts, typically with little influence on how their bodies and lives are represented and ‘datafied’.



I am grateful to John Cromby, Des Fitzgerald, Maurizio Meloni and Henrik Vogt for very helpful comments on an earlier version of this chapter. The usual disclaimer applies.


  1. Abernethy, Amy, Edward Abrahams, Anna Barker, Ken Buetow, Randy Burkholder, William S. Dalton, et al. 2014. Turning the Tide Against Cancer through Sustained Medical Innovation: The Pathway to Progress. Clinical Cancer Research 20 (5): 1081–1086.CrossRefGoogle Scholar
  2. Agus, David B. 2016. The Lucky Years: How to Thrive in the Brave New World of Health. New York: Simon & Schuster.Google Scholar
  3. Ausiello, Dennis. 2013. From Symptomatic to Pre-symptomatic, Continuous Care. YouTube, 26 March. Accessed 29 March 2016.
  4. Bazelier, Marloes T., Frank de Vries, Joan Bentzen, Peter Vestergaard, Hubert G.M. Leufkens, Tjeerd-Pieter Van Staa, and Nils Koch-Henriksen. 2012. Incidence of Fractures in Patients with Multiple Sclerosis: The Danish National Health Registers. Multiple Sclerosis Journal 18 (5): 622–627.CrossRefGoogle Scholar
  5. Britnell, Mark. 2015. In Search of the Perfect Health System. London: Palgrave.CrossRefGoogle Scholar
  6. Casper, Monica J., and Lisa-Jean Moore. 2009. Missing Bodies: The Politics of Visibility. New York: New York University Press.Google Scholar
  7. Cetina, Krin K. 2005. The Rise of a Culture of Life. EMBO Reports 6 (S1): S76–S80.CrossRefGoogle Scholar
  8. Clarke, Adele E., Janet K. Shim, Laura Mamo, Jennifer R. Fosket, and Jennifer R. Fishman, eds. 2010. Biomedicalization: Technoscience and Transformations of Health and Illness in the U.S. Durham, NC: Duke University Press.Google Scholar
  9. Cressey, Daniel. 2008. Adverse Drug Reactions a Big Killer. Nature news online, 17 March. Accessed 26 August 2017.
  10. Dean, Jodi. 2016. Big Data: Accumulation and Enclosure. Theory & Event 19 (3).Google Scholar
  11. Desmond-Hellmann, Susan. 2012. Toward precision medicine: A new social contract? Science Translational Medicine 4 (127): 127ed3.Google Scholar
  12. European Science Foundation (ESF). 2012. Personalised Medicine for the European Citizen—Towards More Precise Medicine for the Diagnosis, Treatment and Prevention of Disease. Strasbourg: ESF.Google Scholar
  13. Green, Sara, and Henrik Vogt. 2016. Personalizing Medicine: Disease Prevention in Silico and in Socio. Journal of Philosophical Studies, 30: 105–145.Google Scholar
  14. Hanson, Mark A., Felicia M. Low, and Peter D. Gluckman. 2011. Epigenetic Epidemiology: The Rebirth of Soft Inheritance. Annals of Nutrition and Metabolism 58 (2): 8–15.CrossRefGoogle Scholar
  15. Harford, Tim. 2014. Big Data: Are We Making a Big Mistake? Financial Times Weekend Magazine 29 (30 March): 28–31.Google Scholar
  16. Hartzband, Pamela, and Jerome Groopman. 2016. Medical Taylorism. New England Journal of Medicine 374 (2): 106–108.CrossRefGoogle Scholar
  17. Hedgecoe, Adam. 2004. The Politics of Personalised Medicine: Pharmacogenetics in the Clinic. Cambridge: Cambridge University Press.CrossRefGoogle Scholar
  18. Hein, Buster. 2015. How Apple Watch could Predict Heart Attacks in the Future. CultofMac, 8 May. Accessed 26 August 2017.
  19. Hood, Leroy. 2008. Systems Biology and Systems Medicine: From Reactive to Predictive, Personalized, Preventive and Participatory (P4) Medicine. Engineering in Medicine and Biology Society. EMBS 30th Annual International Conference of the IEEE. cliv-cliv. Google Scholar
  20. Jensen, Peter B., Lars J. Jensen, and Soren Brunak. 2012. Mining Electronic Health Records: Towards Better Research Applications and Clinical Care. Nature Reviews Genetics 13: 395–405.CrossRefGoogle Scholar
  21. Jewson, Nicholas D. 1976. The Disappearance of the Sick-Man from Medical Cosmology, 1770–1870. Sociology 10 (2): 225–244.CrossRefGoogle Scholar
  22. Khoury, Muin J., Tram K. Lam, John P. Ioannidis, Patricia Hartge, Margaret R. Spitz, Julie E. Buring, Stephen J. Chanock, et al. 2013. Transforming Epidemiology for 21st Century Medicine and Public Health. Cancer Epidemiology, Biomarkers and Prevention 22 (4): 508–516.CrossRefGoogle Scholar
  23. Lakoff, George, and Mark Johnson. 1998. Metaphors We Live By. Chicago, IL: University of Chicago Press.Google Scholar
  24. Lareau, David. 2012. The Data Tsunami. Healthcare IT News, May 3. Accessed May 10, 2016.
  25. Lazarou, Jason, Bruce H. Pomeranz, and Paul N. Corey. 1998. Incidence of Adverse Drug Reactions in Hospitalized Patients: A Meta-analysis of Prospective Studies. JAMA 279 (15): 1200–1205.CrossRefGoogle Scholar
  26. Levy, Karyne. 2014. Google is Going to Collect Information to Try and Figure out the Perfectly Healthy Human. Business Insider, 14 July. Accessed 26 August 2017.
  27. Longhurst, Christopher A., Robert A. Harrington, and Nigam H. Shah. 2014. A “Green Button” for Using Aggregate Patient Data at the Point of Care. Health Affairs 33 (7): 1229–1235.CrossRefGoogle Scholar
  28. Lupton, Deborah. 2013. Watery Metaphors: Swimming or Drowning in the Data Ocean. The Sociological Life blog, 29 October. Accessed 27 August 2017.
  29. Lynch, Michael, Simon A. Cole, Ruth McNally, and Kathleen Jordan. 2010. Truth Machine: The Contentious History of DNA Fingerprinting. Chicago: University of Chicago Press.Google Scholar
  30. Mansfield, Becky, and Julie Guthman. 2014. Epigenetic Life: Biological Plasticity, Abnormality, and New Configurations of Race and Reproduction. Cultural Geographies 22 (3): 3–20.Google Scholar
  31. Mayer-Schönberger, Viktor, and Kenneth Cukier. 2013. Big Data. London: John Murray Publishers.Google Scholar
  32. Meloni, Maurizio. 2016. Political Biology: Science and Social Values in Human Heredity from Eugenics to Epigenetics. Basingstoke: Springer.CrossRefGoogle Scholar
  33. Meloni, Maurizio, and Giuseppe Testa. 2014. Scrutinizing the Epigenetics Revolution. BioSocieties 9 (4): 431–456.CrossRefGoogle Scholar
  34. de Mul, Jos. 1999. The Informatization of the Worldview. Information, Communication and Society 2 (1): 69–94.CrossRefGoogle Scholar
  35. Nettleton, Sarah. 2004. The Emergence of E-Scaped Medicine? Sociology 38 (4): 661–679.CrossRefGoogle Scholar
  36. [US] National Academy of Sciences (NAS). 2011. Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and A New Taxonomy of Disease. Washington, DC: NAS.Google Scholar
  37. Neff, Gina. 2013. Why Big Data Won’t Cure Us. Big Data 1 (3): 117–123.CrossRefGoogle Scholar
  38. Noble, Denis. 2008. The Music of Life: Biology Beyond Genes. Oxford, UK: Oxford University Press.Google Scholar
  39. Onakpoya, Igho J., Carl J. Heneghan, and Jeffrey K. Aronson. 2016. Worldwide Withdrawal of Medicinal Products Because of Adverse Drug Reactions: A Systematic Review and Analysis. Critical Reviews in Toxicology. doi: 10.3109/10408444.2016.1149452
  40. Özdemir, Vural, Kamal F. Badr, Edward S. Dove, Laszlo Endrenyi, Christy Jo Geraci, Peter J. Hotez, Djims Milius, et al. 2013. Crowd-Funded Micro-grants for Genomics and Big Data: An Actionable Idea Connecting Small (Artisan) Science, Infrastructure Science, and Citizen Philanthropy. OMICS A Journal of Integrative Biology 17 (4): 161–172.CrossRefGoogle Scholar
  41. Pálsson, Gísli. 2007. How Deep is the Skin? The Geneticization of Race and Medicine. BioSocieties 2: 257–272.CrossRefGoogle Scholar
  42. Pariser, Eli. 2012. The Filter Bubble: What the Internet is Hiding From You. London: Penguin.CrossRefGoogle Scholar
  43. PerMed Consortium. 2015. Shaping Europe’s Vision for Personalised Medicine: Strategic Research and Innovation Agenda. Cologne. Accessed 13 December 2015
  44. Prainsack, Barbara. 2007. Research Populations: Biobanks in Israel. New Genetics and Society 26 (1): 85–103.CrossRefGoogle Scholar
  45. ———. 2015a. Is Personalised Medicine Different? (Reinscription: The Sequel). A Response to Troy Duster. British Journal of Sociology 66 (1): 28–35.CrossRefGoogle Scholar
  46. ———. 2015b. Three “H”s for Health—The Darker Side of Big Data. Forum Bioethica 8 (2): 4–5.Google Scholar
  47. ———. forthcoming. Personalization from Below: Participatory Medicine in the 21st Century? New York City: New York University Press.Google Scholar
  48. Prainsack, Barbara, Silke Schicktanz, and Gabriele Werner-Felmayer, eds. 2014. Genetics as Social Practice, 147–164. Farnham: Ashgate.Google Scholar
  49. Robinson, Peter N. 2012. Deep Phenotyping for Precision Medicine. Human Mutation 33 (5): 777–780.CrossRefGoogle Scholar
  50. Rose, Nikolas. 1999. Powers of Freedom: Reframing Political Thought. Cambridge, UK: Cambridge University Press.CrossRefGoogle Scholar
  51. ———. 2007. The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton: Princeton University Press.CrossRefGoogle Scholar
  52. Roski, Joachim, George W. Bo-Linn, and Timothy A. Andrews. 2014. Creating Value in Health Care Through Big Data: Opportunities and Policy Implications. Health Affairs 33 (7): 1115–1122.CrossRefGoogle Scholar
  53. Schatz, Bruce R. 2015. National Surveys of Population Health: Big Data Analytics for Mobile Health Monitors. Big Data 3 (4): 219–229.CrossRefGoogle Scholar
  54. Skinner, David. 2006. Racialized Futures: Biologism and the Changing Politics of Identity. Social Studies of Science 36 (3): 459–488.CrossRefGoogle Scholar
  55. Taylor, Astra. 2014. The People’s Platform: Taking Back Power and Culture in the Digital Age. New York: Picador.Google Scholar
  56. Timmermans, Stefan, and Mara Buchbinder. 2010. Patients-in-waiting Living between Sickness and Health in the Genomics Era. Journal of Health and Social Behavior 51 (4): 408–423.CrossRefGoogle Scholar
  57. Topol, Eric. 2012. The Creative Destruction of Medicine: How the Digital Revolution Will Create Better Health Care. New York: Basic Books.Google Scholar
  58. ———. 2015. The Patient will See You Now: The Future of Medicine is in Your Hands. New York: Basic Books.Google Scholar
  59. Tutton, Richard. 2014. Genomics and the Reimagining of Personalized Medicine. Farnham: Ashgate.Google Scholar
  60. United Nations (U.N.) International Convenant on Economic, Social and Cultural Rights. 1966. Accessed 27 August 2017.
  61. Vogt, Henrik, Elling Ulvestad, Thor Eirik Eriksen Cand Polit, and Linn Getz. 2014. Getting Personal: Can Systems Medicine Integrate Scientific and Humanistic Conceptions of the Patient? Journal of Evaluation in Clinical Practice 20: 942–952.CrossRefGoogle Scholar
  62. Vogt, Henrik, Bjørn Hofmann, and Linn Getz. 2016. The New Holism: P4 Systems Medicine and the Medicalization of Health and Life Itself. Medicine, Health Care and Philosophy 19: 307–323.CrossRefGoogle Scholar
  63. Waldby, Catherine. 2000. The Visible Human Project: Information Bodies and Posthuman Medicine. London: Routledge.CrossRefGoogle Scholar
  64. Weber, Griffin M., Kenneth D. Mandl, and Isaac S. Kohane. 2014. Finding the Missing Link for Big Biomedical Data. The Journal of the American Medical Association 331 (24): 2479–2480.Google Scholar
  65. Webster, Andrew. 2002. Innovative Health Technologies and the Social: Redefining Health, Medicine and the Body. Current Sociology 50 (3): 443–457.CrossRefGoogle Scholar
  66. Weston, Andrea D., and Leroy Hood. 2004. Systems Biology, Proteomics, and the Future of Health Care: Toward Predictive, Preventative, and Personalized Medicine. Journal of Proteome Research 3: 179–196.CrossRefGoogle Scholar
  67. Zwolsman, Sandra E., Nynke van Dijk, and Margreet Wieringa de Waard. 2013. Observations of Evidence-based Medicine in General Practice. Perspectives on Medical Education 2: 196–208.CrossRefGoogle Scholar

Copyright information

© The Author(s) 2018

Authors and Affiliations

  • Barbara Prainsack
    • 1
  1. 1.King’s College LondonLondonUK

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