Event location
FHH 171, 26 March 2025: 12:15 – 13:15
Abstract
The pharmaceutical sector is seeing a change from blockbuster medicines to targeted therapies for small patient populations. As this change often comes with unprecedentedly high prices and uncertainty about treatment effects, a central concern becomes determining the therapies’ value – clinically as well as financially. Based on extensive fieldwork in 2022-2023, in which I followed the clinical introduction of the first gene therapy in Denmark (Luxturna), I explore how value is negotiated and settled through an ‘objective data double’ that comes to ‘stand in’ for the treatment experience of patients. To enable patient access for Luxturna, which targets a rare inherited eye disease, the pharmaceutical company and the public authorities agreed on an outcome-based payment agreement in which annual test results of patients determine the medicine’s price. This economic innovation rested on a mutual understanding that Luxturna’s effect could be measured ‘100% objectively’, fostering what Porter (1995) describes as trust based on “mechanical objectivity”.
How does the ‘objective data double’ work to establish Luxturna’s value, and in what ways does it relate to patients’ subjective experience of the treatment’s value? How is objectivity created, curated and maintained – and by whom? What are the consequences when complex questions of value are reduced to objective test results? Following the life of the ‘objective data double’ in the clinic, I show the particular material and social infrastructures that its facilitation requires, its surprising instability, and the mundane work of the people involved to make it thrive – sometimes at the expense of subjective experience.