Abstract
The author of this chapter focuses on one key element put forward in Prainsack’s arguments: the deployment of a moral vocabulary in current visions of data-rich precision medicine. Appeals to ethical values are so ubiquitous in this field that they seem to be part of what can be called a moral economy, which plays a fundamental role in building the credibility of this new approach to health and disease in the eyes of policy-makers, healthcare professionals, and the public.
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References
Bookman, E. B., Langehorne, A. A., Eckfeldt, J. H., Glass, K. C., Jarvik, G. P., Klag, M., et al. (2006). Reporting genetic results in research studies: Summary and recommendations of an NHLBI working group. American Journal of Medical Genetics, 140A, 1033–1040.
Bunnik, E. M., Janssens, A. C., & Schermer, M. (2014). Personal utility in genomic testing: Is there such a thing? Journal of Medical Ethics, 41, 322–326.
Clarke, A., & Thirlaway, K. (2011). Genetic counselling for personalised medicine. Human Genetics, 130, 27–31.
Edelman, E., & Eng, C. (2009). A practical guide to interpretation and clinical application of personal genomic screening. British Medical Journal, 339, b4253.
Fassin, D. (2009). Les économies morales revisitées. Annales, Histoire, Sciences Sociales, 6, 1237–1266.
Fassin, D., & Eidelman, J.-S. (2012). Défense et illustrations des économies morales. In D. Fassin, et al. (Eds.), Economies morales contemporaines (pp. 9–18). Paris: La Découverte.
Foster, M. W., Mulvihill, J. J., & Sharp, R. R. (2009). Evaluating the utility of personal genomic information. Genetics in Medicine, 11, 570–574.
Guchet, X. (2016). La médecine personnalisée. Un essai philosophique. Paris: Les Belles Lettres.
Henrikson, N. B., Bowen, D., & Burke, W. (2009). Does genomic risk information motivate people to change their behavior? Genome Medicine, 1, 37.
IOM (Institute of Medicine). (2012). Evolution of Translational Omics: Lessons Learned and the Path Forward. Washington, DC: The National Academies Press.
NAS (National Academies of Sciences, Engineering, and Medicine). (2018). Returning Individual Research Results to Participants: Guidance for a New Research Paradigm. Washington, DC: The National Academies Press.
Ravitsky, V., & Wilfond, B. S. (2006). Disclosing individual genetic results to research participants. American Journal of Bioethics, 6, 8–17.
Rose, N. (2007). The Politics of Life Itself: Biomedicine, Power, and Subjectivity in the Twenty-First Century. Princeton, NJ: Princeton University Press.
Rose, N. (2013). Personalised medicine: Promises, problems and perils of a new paradigm for healthcare. Procedia—Social and Behavioral Sciences, 77, 341–352.
Shirts, B. H., & Parker, L. S. (2008). Changing interpretations, stable genes: Responsibilities of patients, professionals, and policy makers in the clinical interpretation of complex genomic information. Genetics in Medicine, 10, 778–783.
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Barazzetti, G. (2020). The Moral Making of Data-Rich Personalised Medicine. In: Mahr, D., von Arx, M. (eds) De-Sequencing. Health, Technology and Society. Palgrave Macmillan, Singapore. https://doi.org/10.1007/978-981-15-7728-4_9
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DOI: https://doi.org/10.1007/978-981-15-7728-4_9
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