Data Mining in Systems Medicine and the Project of Solidarity: The Interface of Genomics and Society Revisited
In the vision of precision medicine, genomics is no longer a soloist; it is part of a much larger orchestra. What does this mean for ELSA (an acronym for ethical, legal, and social aspects of) genomics? The author of this chapter argues that there are a n
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Introduction: From Genomic Medicine to Precision Medicine
In 2013, the American author Dave Eggers wrote a book titled The Circle, in which he presented a dystopian fantasy of a future in which people’s lives take place primarily through social media. The Circle is the name of the social media company that bears a striking resemblance to Facebook, except that its penetration into all aspects of people’s lives is even more pronounced than in the case of its actual-world counterpart. In the book, people have forgotten what it is like to live offline, and This chapter draws in part upon the following book: Barbara Prainsack. 2017. Personalized Medicine: Empowered Patients in the 21st Century? New York: New York University Press.
B. Prainsack (B) Department of Political Science, University of Vienna, Vienna, Austria e-mail: [email protected] Department of Global Health & Social Medicine, King’s College London, London, UK © The Author(s) 2020 D. Mahr and M. von Arx (eds.), De-Sequencing, Health, Technology and Society, https://doi.org/10.1007/978-981-15-7728-4_7
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anybody who tries to reconnect to their old analogous selves is cast out of society, or, in the worst case, even killed in an attempt to help them. They are little more than their digital data doubles, consisting of social media activities and other digital traces. Being social —not in the oldfashioned sense of engaging with other people, but rather living in and on social media—has also taken over politics: in Dave Eggers’ story, the social media market is dominated by one big company that ultimately also takes over the role of running elections. Medicine, of course, features very prominently in the book. One would expect that healthcare has turned into a ‘Gattaca’-like1 enterprise where people have their genome sequenced at birth and are stratified into different groups according to their genetic predispositions; perhaps those with very poor genetic predispositions will be sorted out right away so that society saves itself the cost of investing in them. What we find in the book, however, is very different. In none of the scenes that revolve around healthcare, and there are quite a few of them, is DNA even mentioned. The scenarios are futuristic: in the first scene, Mae, the protagonist of the story, who has just started a job at The Circle, is called in for an appointment with an occupational physician. When Mae arrives, the physician already knows more about Mae’s lifestyle and health status than does Mae herself, mainly through Mae’s health information that is stored online, and through other things that can be learned from analysing Mae’s social media activities. During her appointment with the doctor, a number of tests are run on her, and she is asked to drink a smoothie containing nanosensors; these will measure a number of biomarkers from inside her body. She is also given a cardio-sensor to wear around her wrist. Every two weeks, Mae is told, she will need to come back to see her doctor, who will run a standar
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