Anna Brueckner Johansen

In 2019, the Danish health authorities rejected a medicine targeting a small group of patients with a rare eye disease due to ‘unreasonably high pricing’. Following sustained public pressure and continuing negotiations, the medicine was eventually approved as standard treatment. But the prioritization dilemma and public debate brought into sharp relief how seemingly contradictory collective and individual futures intersect in the Danish welfare state, and how affect shapes the articulations of these futures. In public health scholarship, the role of affect in prioritization dilemmas remains underexplored. This paper takes up this gap. Drawing on ethnographic fieldwork among patients, relatives, the pharmaceutical industry and state-bureaucrats, we show that decision-making is shaped by compassion directed both towards the individual and the collectivity. Compassion is not only mobilized through narratives of individual suffering and exceptionalism. Rather, prioritization stakeholders also frame the welfare state as an object of care, evoking compassion for the moral and economic sustainability of a future welfare state collectivity.

While massive private and public investments have been channelled into high-profile genomic research, the vast resources required locally to implement the resulting diagnostic and therapeutic products are often overlooked. Precision medicine challenges existing conceptions of disease, demands new ways of organizing clinical work, and comes with vexing dilemmas of priority setting. Further, to foster innovation and provide highly specialized care to select patients, clinical practices become increasingly experimental, casting patients as research subjects. Drawing on contemporary social science research, this chapter examines the frictions arising between the lofty promises of precision medicine to offer safer, cheaper, and more effective treatments, and the actual clinical practices of precision medicine. The chapter begins with an introduction to precision medicine before it outlines topical conversations on how this development might reconfigure clinical work and patienthood. The chapter ends with a discussion of pressing issues of global inequalities in access to the technologies of precision medicine. In particular, we discuss the representational dilemma built into precision medicine as initiatives vacillate between bioethical attempts to protect minority groups from exploitation and the risk of underrepresenting the very same groups in genetic research.

We investigate how temporality matters in processes of valuation. Taking our empirical point of departure in the case of a novel gene therapy that has been the centre of a heated pricing debate, we explore how the ‘goodness’ of such a pharmaceutical good was negotiated by researchers, patients, pharmaceutical companies and regulators, and how these negotiations were shaped by the mobilisation of past experiences and future expectations. Seeking to advance the beginning of an analytical sensitivity to temporality in valuation studies, we develop the notion of ‘temporal layering’. We argue that moments of valuation consist of multiple ‘temporal layers’ where select past experiences and future expectations are rendered visible – or left obscure – depending on how these layers are drawn upon in valuation struggles and by whom. Thus, what is at stake in determining the ‘good’ in particular moments of valuation is not just a contest over certain qualities or ways to evaluate an object, but also over which (particular layers of) pasts and futures come to count. We suggest that such fine-grained temporal analysis can provide new openings to questions of valuation for a wide-ranging array of economic objects, particularly for those situated in contemporary bioeconomies.

The introduction of personalized medicine marks a shift in pregnancy-related screening, from fetal to maternal health risks putting the pregnant woman's future orientations center stage. Drawing on fieldwork from pregnancy outpatient clinics and 11 interviews with pregnant women diagnosed with gestational diabetes and offered genetic testing, we use their experiences of time to explore how futurity is reshaped by notions of early detection and at-riskness. We offer the concept of "future prism" to capture how multiple situations of orienting toward the future shape and circumscribe one's experience of the future - an orientation that makes genetic testing almost impossible to refuse.