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Paper short abstract

Personalised medicine promises precision yet often delivers exclusionary “club goods.” We argue that its inequities stem from dominant forms of infrastructuring and political economy, and explore solidaristic, participatory and alternative innovation models for a better personalised medicine.

Paper long abstract

Personalised medicine (PM) is animated by promise: of precision, efficiency, and improved futures for health. Yet as PM infrastructures scale across clinical, regulatory, and data domains, their benefits frequently crystallise as what political economy would term club goods—costly, exclusionary, and governed through forms of private control. We argue that many of PM’s inequities—unequal access to therapies, dataset bias, group harms, and the diversion of public resources—are not incidental shortcomings but effects of particular forms of infrastructuring. The calculative arrangements that enable stratification require standardisation, interoperability, and comparability; in rendering populations legible at scale, they abstract from the relational and situated character of care, generating new exclusions even as they promise inclusion.

In response to this panel’s question—what makes a better personalised medicine?—we examine several avenues of redress that intervene not only at the level of ethics or policy but at the level of infrastructure itself. First, social pharmaceutical innovation (SPIN) and mixed economies of drug development challenge the concentration of value within proprietary innovation systems and reconfigure how therapeutic infrastructures are built and sustained. Second, meaningful patient and public involvement—including co-production in research design and service delivery—reorients infrastructuring processes toward experiential knowledge and shared authority. Third, solidaristic approaches to data governance extend concern beyond individual consent to collective oversight, secondary data subjects, and the pursuit of public value.

A better personalised medicine, we suggest, is not less precise but differently infrastructured: attentive to scale, politically accountable, and capable of sustaining both differentiation and collective wellbeing.