In search of ‘extra data’: Making tissues flow from personal to personalised medicine
Research output: Contribution to journal › Journal article › Research › peer-review
Standard
In search of ‘extra data’ : Making tissues flow from personal to personalised medicine. / Pinel, Clémence; Svendsen, Mette N.
In: Big Data and Society, Vol. 8, No. 2, 2021.Research output: Contribution to journal › Journal article › Research › peer-review
Harvard
APA
Vancouver
Author
Bibtex
}
RIS
TY - JOUR
T1 - In search of ‘extra data’
T2 - Making tissues flow from personal to personalised medicine
AU - Pinel, Clémence
AU - Svendsen, Mette N.
N1 - Publisher Copyright: © The Author(s) 2021.
PY - 2021
Y1 - 2021
N2 - One of the key features of the contemporary data economy is the widespread circulation of data and its interoperability. Critical data scholars have analysed data repurposing practices and other factors facilitating the travelling of data. While this approach focused on flows provides great potential, in this article we argue that it tends to overlook questions of attachment and belonging. Drawing upon ethnographic fieldwork within a Danish data-linkage infrastructure, and building upon insights from archival science, we discuss the work of data practitioners enabling the repurposing of pathology samples extracted from patients for the conduct of ‘personal medicine’ – our term to discuss the so-called old-fashioned treatment of patients – towards personalised medicine. This first involves ‘getting to know’ the tissues and unpacking their previous uses and meanings, then detaching them from their original source to extract data from such tissues and making them flow towards a new container where they can be worked on and connected with other data. As data practitioners make these tissues travel, transforming them into research data, they organise the attachments of data to new agendas, persons and places. Crucially, in our case, we observe the prominence of national attachments, whereby managing tissues and data in and out of containers involves tying them to the nation to serve its interests. We thus expose how the building of data linkage infrastructures entails more than the accumulation and curation of data, but also involves crafting meanings, futures and belonging to specific communities and territories.
AB - One of the key features of the contemporary data economy is the widespread circulation of data and its interoperability. Critical data scholars have analysed data repurposing practices and other factors facilitating the travelling of data. While this approach focused on flows provides great potential, in this article we argue that it tends to overlook questions of attachment and belonging. Drawing upon ethnographic fieldwork within a Danish data-linkage infrastructure, and building upon insights from archival science, we discuss the work of data practitioners enabling the repurposing of pathology samples extracted from patients for the conduct of ‘personal medicine’ – our term to discuss the so-called old-fashioned treatment of patients – towards personalised medicine. This first involves ‘getting to know’ the tissues and unpacking their previous uses and meanings, then detaching them from their original source to extract data from such tissues and making them flow towards a new container where they can be worked on and connected with other data. As data practitioners make these tissues travel, transforming them into research data, they organise the attachments of data to new agendas, persons and places. Crucially, in our case, we observe the prominence of national attachments, whereby managing tissues and data in and out of containers involves tying them to the nation to serve its interests. We thus expose how the building of data linkage infrastructures entails more than the accumulation and curation of data, but also involves crafting meanings, futures and belonging to specific communities and territories.
KW - archives
KW - belonging
KW - Data
KW - flow
KW - personalised medicine
KW - tissue
U2 - 10.1177/20539517211035664
DO - 10.1177/20539517211035664
M3 - Journal article
AN - SCOPUS:85111829309
VL - 8
JO - Big Data & Society
JF - Big Data & Society
SN - 2053-9517
IS - 2
ER -
ID: 276321215