Responsible Innovation: The Case of Alzheimer Diagnostics

  • Jeannette Pols
  • Amade M’charek
Part of the Health, Technology and Society book series (HTE)


Biomedical innovation is often envisioned as a linear process, translating results of lab research into the clinic. The assumption is that deliberation with different concerned parties contributes to responsible innovation. Focusing on the case of Alzheimer diagnostics, Pols and M’charek demonstrate that innovations do not emerge in a linear way. Patient advocacy movements engage with scientific research, and research and clinical practices are highly intertwined. Yet, research and clinical practices may also have very different problem definitions, aims, knowledge, concerns, and pace. Pols and M’charek argue that responsible innovation, rather than privileging a particular type of laboratory research, should start innovations by taking notice of the different manifestations of ‘Alzheimer problems’ and the different science-clinic-representation practices needed to address these problems.


Research Practice Research Proposal Patient Organization Memory Clinic Responsible Innovation 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.



We thank the project leader of the medical project used as exemplar here for generously making available their protocol and the researchers involved in the study of GP diagnostic practice for our discussions and their permission to use their texts for this chapter.


  1. Anderson, W. 2008. The Collectors of Lost Souls: Turning Kuru Scientists into Whitemen. Baltimore, MD: Johns Hopkins University Press.Google Scholar
  2. Anderson, W. 2013. Objectivity and Its Discontents. Social Studies of Science 43(4): 557–576.CrossRefGoogle Scholar
  3. ANL. 2015. Accessed 22 Jul 2015.
  4. Beard, R.L. 2004. Advocating Voice. Organisational, Historical and Social Milieu of Alzheimer’s Disease Movement. Sociology of Health & illness 26(6): 797–819.CrossRefGoogle Scholar
  5. Bond, J. 1992. The Medicalization of Dementia. Journal of Aging Studies 6(4): 397–403.CrossRefGoogle Scholar
  6. Borup, M., N. Brown, K. Konrad, and H. van Lente. 2006. The Sociology of Expectations in Science and Technology. Technology Analysis & Strategic Management 18: 285–298.CrossRefGoogle Scholar
  7. Brown, N. 2003. Hope Against Hype: Accountability in Biopasts, Presents and Futures. Science Studies 16(2): 3–21.Google Scholar
  8. Brown, N., and M. Michael. 2003. A Sociology of Expectations: Retrospecting Prospects and Prospecting Retrospects. Technology Analysis & Strategic Management 15: 3–18.CrossRefGoogle Scholar
  9. CBO. 2005 Richtlijn Diagnostiek en medicamenteuze behandeling van dementie. Alphen aan de Rijn: Van Zuiden Communications B.V.Google Scholar
  10. Dhedhi, S.A., D. Swinglehurst, and J. Russell. 2014. ‘Timely’ Diagnosis of Dementia: What Does It Mean? A Narrative Analysis of GPs’ Accounts. BMJ Open 4(3): e004439.CrossRefGoogle Scholar
  11. Epstein, S. 1996. Impure Science; AIDS, Activism, and the Politics of Knowledge. Berkeley: University of California Press.Google Scholar
  12. Harbers, H. 2005. Epilogue: Political Materials – Material Politics. In Inside the Politics of Technology: Agency and Normativity in the Co-Production of Technology and Society, ed. H. Harbers, 257–272. Amsterdam: Amsterdam University Press.CrossRefGoogle Scholar
  13. Kitwood, T. 1993. Towards a Theory of Dementia Care: The Interpersonal Process. Aging and Society 17(1): 51–67.CrossRefGoogle Scholar
  14. Leibing, A. 2008. Entangled Matters: Alzheimer’s, Interiority, and the “Unflattening” of the World. Culture, Medicine, and Psychiatry 32(2): 177–193.CrossRefGoogle Scholar
  15. M’charek, A. 2014. Race, Time and Folded Objects: The HeLa Error. Theory, Culture and Society 31(6): 29–56.CrossRefGoogle Scholar
  16. Mitchell, A.J., N. Meader, and M. Pentzek. 2011. Clinical Recognition of Dementia and Cognitive Impairment in Primary Care: A Meta-Analysis of Physician Accuracy. Acta Psychiatrica Scandinavica 124(3): 165–183.CrossRefGoogle Scholar
  17. Mol, A. 2002. The Body Multiple: Ontology in Medical Practice. Durham, NC: Duke University Press.CrossRefGoogle Scholar
  18. Mol, A. 2006. Proving or Improving: On Health Care Research as a Form of Self-Reflection. Qualitative Health Research 16: 405–414.CrossRefGoogle Scholar
  19. Moreira, T., O. O’Donovan, and E. Howlett. 2014. Assembling Dementia Care: Patient Organisations and Social Research. BioSocieties 9(2): 173–193.CrossRefGoogle Scholar
  20. Moser, I. 2010. Perhaps Tears Should Not Be Counted but Wiped Away: On Quality and Improvement in Dementia Care. In Care in Practice: On Tinkering in Clinics, Homes and Farms, eds. A. Mol, I. Moser, and J. Pols, 277–300. Bielefeld: Transcript Verlag.Google Scholar
  21. Moser, I. 2011. Dementia and the Limits to Life: Anthropological Sensibilities, STS Interferences, and Possibilities for Action in Care. Science, Technology and Human Values 36(5): 704–722.CrossRefGoogle Scholar
  22. Pols, J. 2014. Knowing patients: turning patient knowledge into science. Science, Technology & Human Values, 39(1): 64–87.Google Scholar
  23. Prins, A., F. Hemke, J. Pols, and E. Moll van Charante. (2016). Diagnosing Dementia in Dutch General Practice. British Journal of General Practice.
  24. Rabeharisoa, V., T. Moreira, and M. Akrich. 2014. Evidence-Based Activism: Patients’, Users’ and Activists’ Groups in Knowledge Society. BioSocieties 9(2): 111–128.CrossRefGoogle Scholar
  25. Van den Dungen, P., H.W. van Marwijk, H.E. van der Horst, E.P. Moll van Charante, J. MacNeil Vroomen, P.M. Van der Ven, and H.P. van Hout. 2012. The Accuracy of Family Physicians’ Dementia Diagnoses at Different Stages of Dementia: A Systematic Review. International Journal of Geriatric Psychiatry 27(4): 342–354.Google Scholar
  26. Whitehouse, P., and D. George. 2008. The Myth of Alzheimer’s: What You Aren’t Being Told About Today’s Most Dreaded Diagnosis. New York: St. Martin’s Press.Google Scholar

Copyright information

© The Author(s) 2016

Authors and Affiliations

  • Jeannette Pols
    • 1
  • Amade M’charek
    • 2
  1. 1.Section of Medical Ethics, Department of General Practice, Academic Medical CentreAmsterdamThe Netherlands
  2. 2.Department of AnthropologyUniversity of AmsterdamAmsterdamThe Netherlands

Personalised recommendations