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Paper short abstract:

Our paper investigates the participatory features of precision medicine through a comparative analysis of the “Precision Medicine Initiative” (PMI) in the US, and the “100K Genomes Project” in England.

Paper long abstract:

Our paper investigates the participatory features of precision medicine - a heading of increasing traction for several biomedical projects aimed at reforming clinical care by mining individual differences - starting from an STS framework grounded in the model proposed by Kelty and Panofsky (2014) with the identification of seven dimensions of participation.

The popularity of precision medicine has been rising steadily following Obama's launch of the "Precision Medicine Initiative" (PMI) in the US. In our work, we have laid the groundwork for a comparative analysis of the PMI vis-à-vis similar initiatives undertaken in other contexts, in particular the "100K Genomes Project" currently ongoing in England. Specifically, we focus on how the epistemic scales of analysis selected in different projects as precision resources (genomes, lifestyles, etc.) shape participatory practices, and vice versa. In line with the reconfiguration of the so called "participatory society", these initiatives are embracing different types of engagements, formal and informal, especially in terms of data sharing and involvement in the research design, as in the partially interactive elements of PMI with "Requests for Information" and "Feedback Site", or in the procedures foreseen by 100K Genomes Project for the "Participant Panel" and the "Rare Disease Nomination Form".

Here we chart the requirements and procedures for participating at these two levels (data sharing and research design) also on the basis of our own engagement experiences, tracing the first contours of a comparative evaluation of Precision Medicine, thereby highlighting the notions of inclusiveness and representation that are embodied in the different practices.