ELSIcon2022 Paper: Precision medicine for whom? Upstream and downstream exclusion

ELSIcon2022 • Paper • May 31, 2022

Ilaria Galasso

This paper scrutinizes the precision medicine (PM) approach in terms of benefits distribution: it examines the expected outputs of PM research and the barriers potentially hindering some sociodemographic groups from benefitting from them (Rothstein 2017; Ferryman and Pitcan 2018). I analyze potential patterns of exclusion upstream (from participating in PM research) and downstream (from benefitting from PM outputs) and their reciprocal influence: PM outputs may be not suitable for the categories underrepresented in the research (Cohn et al. 2017); conversely, exclusion from the outputs may compromise both entrepreneurial and altruistic motivations (Tutton and Prainsack 2011) to participate in the research. Grounded on documentary analysis and fieldwork interviews to PM research leaders and to public health or social medicine scholars and practitioners in the context of the Precision Medicine Initiative (US) and of Genomics England (UK), this paper argues that the equitable capacities of PM are jeopardized by currently unbalanced efforts for inclusion: upstream inclusion efforts are not adequately corresponded downstream. Opposite to the ongoing PM rhetoric, this unbalance goes to the detriment of the most socially disadvantaged and historically underrepresented communities in medical research, and risks exacerbating existing inequalities. I conclude by advocating for a more prominent and explicit focus on socio-environmental determinants of health in PM research, and for aligned public health interventions as PM outputs: they would be to the benefit of all and especially of those who are most at risk of exclusion, and to the promotion of equitable upstream as well as downstream inclusion.