Use of tissue and health data: attachments and detachments among an enabling public

Research output: Contribution to journal › Journal article › Research › peer-review

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Use of tissue and health data : attachments and detachments among an enabling public. / Skovgaard, Lea; Svendsen, Mette N.

In: New Genetics and Society, Vol. 42, No. 1, 2215912, 2023.

Research output: Contribution to journal › Journal article › Research › peer-review

Harvard

Skovgaard, L & Svendsen, MN 2023, 'Use of tissue and health data: attachments and detachments among an enabling public', New Genetics and Society, vol. 42, no. 1, 2215912. https://doi.org/10.1080/14636778.2023.2215912

APA

Skovgaard, L., & Svendsen, M. N. (2023). Use of tissue and health data: attachments and detachments among an enabling public. New Genetics and Society, 42(1), [2215912]. https://doi.org/10.1080/14636778.2023.2215912

Vancouver

Skovgaard L, Svendsen MN. Use of tissue and health data: attachments and detachments among an enabling public. New Genetics and Society. 2023;42(1). 2215912. https://doi.org/10.1080/14636778.2023.2215912

Author

Skovgaard, Lea ; Svendsen, Mette N. / Use of tissue and health data : attachments and detachments among an enabling public. In: New Genetics and Society. 2023 ; Vol. 42, No. 1.

Bibtex

@article{c6ac8606397c4e31ae509633c858ac7d,
title = "Use of tissue and health data: attachments and detachments among an enabling public",
abstract = "Personalized medicine aims at tailoring treatment to the individual person through the sourcing of multiple health data from the population. The realization of these ambitions rest on the ability to reuse health data. But what does it take to reuse tissue and data collected from individuals in connection with treatment, for future purposes? It takes an {"}enabling public{"} consisting of not only people providing tissue and data, but also clinicians, researchers, and civil servants. Based on fieldwork and interviews from Denmark, we investigate how use attaches tissue and data to various actors in the enabling public. We argue that multiple forms of attachments and detachments co-exist and that these persist over time. Attentiveness to the character and coexistence of these attachments is crucial in discussions of the role different actors should play in the governance of tissue and data.",
keywords = "use and reuse of tissue and health data, attachment, detachment, Scandinavia, enabling public, BIG DATA, ISSUES, TECHNOLOGIES, EXCHANGE, POLITICS, GENOMICS, DNA",
author = "Lea Skovgaard and Svendsen, {Mette N.}",
year = "2023",
doi = "10.1080/14636778.2023.2215912",
language = "English",
volume = "42",
journal = "New Genetics and Society",
issn = "1463-6778",
publisher = "Routledge",
number = "1",

}

RIS

TY - JOUR

T1 - Use of tissue and health data

T2 - attachments and detachments among an enabling public

AU - Skovgaard, Lea

AU - Svendsen, Mette N.

PY - 2023

Y1 - 2023

N2 - Personalized medicine aims at tailoring treatment to the individual person through the sourcing of multiple health data from the population. The realization of these ambitions rest on the ability to reuse health data. But what does it take to reuse tissue and data collected from individuals in connection with treatment, for future purposes? It takes an "enabling public" consisting of not only people providing tissue and data, but also clinicians, researchers, and civil servants. Based on fieldwork and interviews from Denmark, we investigate how use attaches tissue and data to various actors in the enabling public. We argue that multiple forms of attachments and detachments co-exist and that these persist over time. Attentiveness to the character and coexistence of these attachments is crucial in discussions of the role different actors should play in the governance of tissue and data.

AB - Personalized medicine aims at tailoring treatment to the individual person through the sourcing of multiple health data from the population. The realization of these ambitions rest on the ability to reuse health data. But what does it take to reuse tissue and data collected from individuals in connection with treatment, for future purposes? It takes an "enabling public" consisting of not only people providing tissue and data, but also clinicians, researchers, and civil servants. Based on fieldwork and interviews from Denmark, we investigate how use attaches tissue and data to various actors in the enabling public. We argue that multiple forms of attachments and detachments co-exist and that these persist over time. Attentiveness to the character and coexistence of these attachments is crucial in discussions of the role different actors should play in the governance of tissue and data.

KW - use and reuse of tissue and health data

KW - attachment

KW - detachment

KW - Scandinavia

KW - enabling public

KW - BIG DATA

KW - ISSUES

KW - TECHNOLOGIES

KW - EXCHANGE

KW - POLITICS

KW - GENOMICS

KW - DNA

U2 - 10.1080/14636778.2023.2215912

DO - 10.1080/14636778.2023.2215912

M3 - Journal article

VL - 42

JO - New Genetics and Society

JF - New Genetics and Society

SN - 1463-6778

IS - 1

M1 - 2215912

ER -

ID: 348139992