TY - JOUR
T1 - Infrastructuring precision medicine
T2 - Making gene therapies for rare diseases workable in practice
AU - Wadmann, Sarah
AU - Johansen, Anna Brueckner
AU - Born, Alfred Peter
AU - Kessel, Line
N1 - Publisher Copyright:
© 2024 Elsevier Ltd
PY - 2024
Y1 - 2024
N2 - Long viewed by social scientists as a future imaginary, precision medicine is now materializing in many healthcare systems in the form of new diagnostic practices and novel treatment modalities, such as gene therapies. Based on an ethnographic study of the introduction of the first two clinically available in-vivo gene therapies in the Danish healthcare system, we investigate what it takes to make these therapies workable in practice. Drawing on social science literature on infrastructuring, we describe the many forms of mundane work required to fit these therapies into regulatory frameworks, political processes and daily work practices in the healthcare system. Further, we observe how the processes of infrastructuring required to introduce the gene therapies into clinical practice had transformative implications as they redistributed roles and responsibilities among clinicians, pharmacists, procurement agencies and pharmaceutical manufacturers.
AB - Long viewed by social scientists as a future imaginary, precision medicine is now materializing in many healthcare systems in the form of new diagnostic practices and novel treatment modalities, such as gene therapies. Based on an ethnographic study of the introduction of the first two clinically available in-vivo gene therapies in the Danish healthcare system, we investigate what it takes to make these therapies workable in practice. Drawing on social science literature on infrastructuring, we describe the many forms of mundane work required to fit these therapies into regulatory frameworks, political processes and daily work practices in the healthcare system. Further, we observe how the processes of infrastructuring required to introduce the gene therapies into clinical practice had transformative implications as they redistributed roles and responsibilities among clinicians, pharmacists, procurement agencies and pharmaceutical manufacturers.
U2 - 10.1016/j.socscimed.2024.116966
DO - 10.1016/j.socscimed.2024.116966
M3 - Journal article
C2 - 38759386
AN - SCOPUS:85193247635
VL - 351
JO - Social Science & Medicine
JF - Social Science & Medicine
SN - 0277-9536
M1 - 116966
ER -