Abstract:
The relationship between science and philosophy has long been shaped by mutual curiosity, but also by asymmetries of power, method, and epistemic authority. Nowhere is this tension more visible than in the governance of digital health technologies, particularly those that claim to democratize science through participation and data sharing. In this talk, I explore how a constructivist and practice-oriented philosophy of science can help us better understand (and critique) the epistemic dynamics at play in participatory online health platform.
Drawing on empirical research with users of platforms like PatientsLikeMe, I analyze how self-reporting practices (so-called “data diaries”) are framed as morally virtuous acts within a new “moral economy of participation.” These platforms promise to empower patients by giving them a voice in health research. However, they often simultaneously commodify that voice, embedding user-generated data into commercial infrastructures with little transparency or shared benefit. From the standpoint of a classical philosophy of science, these dynamics might be overlooked or treated as peripheral. Yet from a situated perspective – deeply informed by feminist epistemology, STS, and participatory methods – they raise essential philosophical questions about what counts as knowledge, who is recognized as a knower, and how science relates to values.
I argue that we need a philosophy of science that is not only meta-reflective but also embedded: one that takes seriously the lived experiences, vulnerabilities, and ethical commitments of those co-producing scientific knowledge from outside traditional academic boundaries. This approach challenges inherited demarcations between science and philosophy, theory and practice, objectivity and situatedness. In the empirical case I will present, platform users explicitly articulate their sense of contributing to the “public good,” while simultaneously grappling with concerns about privacy, exploitation, and epistemic marginalization. Their accounts demand philosophical engagement not as an external critique, but as a mode of accompanying and amplifying marginalized knowledge claims.
I will reflect on how this empirical-ethical work reconfigures the relationship between science and philosophy: not as divergent paths, but as overlapping, entangled, and co-dependent fields of inquiry. I propose that we read participatory health platforms as philosophical sites in their own right – sites where fundamental questions about truth, value, and authority are negotiated under conditions of algorithmic mediation and global inequality. This does not mean dissolving the distinction between science and philosophy, but rather allowing it to become more porous, dialogical, and responsive to the challenges of our time.
