Personalized medicine and big data: what are the social issues raised by these medical and technological advances?

Aceti, Monica and Caiata Zufferey, Maria (2021) Personalized medicine and big data: what are the social issues raised by these medical and technological advances? In: Social Justice in Times of Uncertainty. Conference of the Swiss sociological association, 28-30.6.2021, Genève, Switzerland. (In Press)

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Considered the "medicine of the future", personalized medicine (Guchet, 2016) has made significant advances, particularly in precision oncology thanks to the advent of high-throughput sequencing. The acceleration of diagnostics, as well as "tailor-made" therapies, have improved the treatment of hereditary cancers. These advances have also raised hope for curing chronic, mental and/or orphan diseases. Nonetheless, they also invoke a number of fears (Aceti et al., 2020). In order to understand these tensions, three themes seem to be of major interest from a sociological perspective. Firstly, predictive medicine is not focused on symptoms but on predispositions to develop a disease. In this sense, it is applied to anticipate, monitor or accompany pathogenic risks. While it is promising because it offers previously unimaginable care opportunities, it also raises questions concerning the health injunctions that may accompany it (Caiata Zufferey, 2015). Analyzing the effects of predictive and probabilistic health care is, thus, a crucial issue, especially since it raises the problem of the unequal disposition of different social strata to comply with preventive practices and to benefit from them afterwards. Second, personalized health integrates individual data (such as diet, physical activity, mobility) with health data. It is a growing field that relies more on preventive behaviors than on curative instruments. In this approach, patients are actors of their health and will collect and manage their personal health data in a proactive way, often participating in online databases. The collection of these data raises issues related to big data, to their management and to the various uses of them, whether these uses are scientific, commercial, recreational or abusive. Thirdly, from a broader point of view, this "revolutionary" medicine is based on genome editing techniques and more recently on the "molecular scissors" of the geneticists Charpentier and Doudna (Nobel Prize in Chemistry 2020). Over and above the potential benefits, the possibility to modify our genome raises questions about our intangible genetic heritage, either human or non-human. The innocuity of these modifications, which are transmissible to human offspring, is currently not assured and calls for caution. Based on these considerations, we welcome proposals for contributions addressing the issues of social equality and inequities related to personalized medicine Additional themes are the social consequences of scientific, genetic and technological advances oriented towards health prediction and disease prevention. The following list of topics (non-exhaustive) would be welcome: - Predictive medicine and health moralization - (Un-)certainties generated by genetic knowledge - Protection of personal health data and confidentiality - Unequal access to gene therapies - Perverse effects of unrealistic promises of healing - Genetic traceability - Deviations of genetic uses

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