Precision medicine benefitting populations? Discourse of altruism around precision medicine cohorts
(University College Dublin)
Giuseppe Testa (European Institute of Oncology / University of Milan)
Paper short abstract:
Precision medicine targets individual specificity by analyzing populations commonalities. My paper investigates how, vice versa, analyses on individual specificities are used to target population health interventions, and the extent to which cohort participation is promoted as a matter of altruism.
Paper long abstract:
Precision medicine builds on the collection and the comparison of multiple "big data" from large cohorts, to put specific health onsets in relation to specific conditions by taking advantage from the large scale, with the aim to facilitate the precise understanding and intervention at the individual scale. In some sense, precision medicine targets the unicity of the individual by grounding on analyses on the commonalities of populations. My paper investigates the extent to which, conversely, analyses on individual specificities are expected to contribute targeting population health interventions, as envisioned by the framework of 'precision public health'. In relation to this, I analyze the extent to which the possible contribution to the health of a whole population/community is emphasized as a motivation for sharing data and enrolling in precision medicine cohorts, especially in terms of altruism or solidarity, as opposed to other sorts of motivation/incentivization (Tutton&Prainsack 2011).
My paper analyzes the discourse of altruism and of population health benefits within two leading precision medicine projects: the 100K Genomes Project (UK), and the All of Us Research Project (US).
From my analyses (document analyses and fieldwork interviews), it emerged that different framings of precision medicine encompass different potentials in terms of social or health benefits for populations. Controversial discourses of altruism recur to motivate participation in the cohort, alternating with discourses of empowerment. I argue that, the value of solidarity, if consistently integrated in those framings of precision medicine most genuinely addressing population health, can facilitate inclusive participation and benefits.
Precision medicine at the crossroads: meeting the micro and macro, the molecular and social in new medical strategies