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- Convenors:
-
Saheli Datta Burton
(UCL)
Michael Morrison (University of Oxford)
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- Chairs:
-
Michael Morrison
(University of Oxford)
Saheli Datta Burton (UCL)
- Format:
- Traditional Open Panel
Short Abstract
This panel imagines how or what a ‘better’ - more equitable, solidaristic, care-centred – personalised medicine is or should be through the lens of patient-centred care, patient engagement, responsible data governance, exclusionary tendencies of current PM models, high costs and access barriers.
Description
Personalised medicine (PM) is a multifaceted and evolving set of with data-driven approaches and practices that promise to transform healthcare by tailoring prevention, diagnosis, and treatment to individual biological profiles. It emerged from within earlier medical traditions, from histories of disease classification, public health, technological innovation, to pharmaceutical development. However, the fate of PM today as a socio-technical phenomenon is unsurprisingly shaped by technological, socio-political, and economic imperatives intrinsically tied to data, infrastructures, publics, and treatments. Routinising PM in society poses multiple challenges related to equity and access that are as linked to the exclusionary tendencies of algorithmic models, representativeness of datasets, and the calculus of cost-effectiveness, as they are on iterative dialogical engagement with patients and publics at large. The success of the latter being not only reliant on improving affordability and addressing unmet needs, but also (increasingly) capacity to build, implement and sustain solidaristic data and patient governance frameworks that recognise both individual and collective rights. This is the focus of our panel – to imagine a ‘better’ PM beyond ‘precision-ing’ techniques and technologies that envisions patient-centred care and meaningful public and patient involvement to counteract the ‘depersonalisation’ inherent in data-driven approaches to health and medicine.
We invite empirical and conceptual abstracts, papers, reflections that imagine, research, envision, how or what ‘a better PM’ - a more equitable, solidaristic, and care-centred PM – is or should be. A wide-range of related topics are welcome; from the interplay between PM and related movements such as evidence-based medicine, patient-centred care, patient engagement, high costs, access barriers, to responsible data governance and the exclusionary tendencies of current PM models.
Accepted papers
Session 1Paper 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.
Paper short abstract
Tracing personalized and precision medicine in the twenty first century, this paper uses evolutionary concept analysis to show how shifting labels link care promises to data standards and programs. It asks who or what is included or made invisible as medicine becomes more data-driven.
Paper long abstract
Although standard medical care is already expected to be tailored to a person, personalized medicine is often presented as a novel twenty-first-century ideal. Forming part of a broader lexicon alongside precision, these interchangeable labels direct attention toward progress built around data, standards, and coordination. This is not simply a language issue; these terms carry different promises about what medicine is and who shapes the conditions making those promises plausible across policy, industry, and research.
Using evolutionary concept analysis, I trace how these terms change meaning across research and policy arenas. A preliminary review of publications shows precision become a dominant term post-2015, aligning with the US Precision Medicine Initiative and Europe’s ICPerMed. I then turn to how these agendas enter policy and funding texts, I argue that while personalization points to a broad data footprint, precision narrows the focus to standardized clinical and genomic datasets. Moreover, as these terms travel across different geographies, they function less as stable scientific concepts and more as flexible tools for policy and market-building.
This data-centric trajectory gained significant prominence during the COVID-19 pandemic, reinforcing the assumption that better healthcare requires more data and integration. Yet, "better" and "more" remain hard to measure, while standards continually lag behind expanding data production. If personalization becomes merely a data project, who or what is made invisible? Rather than offering a simple fix, this paper uses concept drift to open critical questions about inclusion, cost, and responsibility in the making of data-driven medicine.
Paper long abstract
Personalised medicine is frequently presented as a straightforward pathway to inclusive and effective care. Yet, as data-driven approaches become increasingly embedded within healthcare systems, concerns are emerging about what kind of ‘personalisation’ is being prioritised and for whom. Through my presentation, I will examine how ‘ethnicity’, a socially complex and politically charged category, is operationalised in genomic medicine, and how its current uses sit uneasily with ambitions for equitable and solidaristic healthcare.
Within the UK National Health Service (NHS), information about ethnicity is routinely collected for population-level monitoring, including equity of access and service utilisation. In genomic medicine, however, ethnicity is additionally mobilised as a proxy for biological ancestry to support the interpretation of genomic data. Despite resting on different epistemic assumptions, these two aims of equity monitoring and clinical interpretation are frequently conflated into a single variable within standardised data infrastructures and algorithmic workflows.
Drawing on qualitative interviews with healthcare professionals involved in genomic medicine, including clinical geneticists, genetic counsellors, lab scientists, and nursing teams, I will examine how ethnicity is interpreted and used in everyday clinical work. By foregrounding healthcare professionals’ perspectives, I will highlight the tensions between administrative classification systems, clinical utility, and ethical concerns about stigma and racialisation. I will argue that attention to the conceptual ambiguity, affective labour, and structural constraints involved in ethnicity recording is essential for understanding how genomic medicine is being integrated into routine care in ways that are equitable and socially responsive.
Paper short abstract
Spanish assisted reproductive care reveals a paradox: although publicly covered, most cycles occur in private clinics. Based on 35 interviews, this paper shows how market-driven innovation and resource-constrained evidence-based public care produce stratified access to personalised medicine.
Paper long abstract
Assisted Reproduction Technologies (ART) in Spain present a paradox: although formally included in the National Health System (NHS), 75% of ART cycles take place in private clinics, requiring substantial out-of-pocket expenditure. Drawing on 35 interviews with patients and practitioners across public and private centres, this paper examines how this configuration reshapes access to reproductive care in a sector marked by tensions between commercialisation and knowledge standardisation (Perrotta & Geampana, 2021).
Private clinics routinely offer expanded diagnostics, PGT-A and other IVF add-ons—interventions introduced despite limited evidence that they improve live birth rates. Research shows that innovation in this sector is closely linked to market competition and the expansion of technological portfolios (Perrotta & Geampana, 2020; van de Wiel, 2019). Clinicians describe pressures to innovate and differentiate services, while patients facing age-related time constraints seek private providers for more extensive testing and the possibility to pursue every available option.
Public hospitals, by contrast, operate within stricter evidentiary and budgetary frameworks, where hierarchies of evidence and cost-effectiveness criteria shape which interventions can be funded. Some clinicians view these constraints as safeguards against unproven treatments, while others argue that rigid criteria may disadvantage certain patients.
These dynamics reveal a broader tension between market-driven personalisation and resource-constrained evidence-based care. This tension fuels an ongoing stratification of reproduction, as access to expanded technological options increasingly depends on patients’ ability to pay. How can personalised medicine be equitable when access to precision technologies is market-mediated? Does a “better” personalised medicine require reconciling individual tailoring with collective sustainability?