Titel
Post-identifiability in changing sociotechnological genomic data environments
Autor*in
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Abstract
Data practices in biomedical research often rely on standards that build on normative assumptions regarding privacy and involve ‘ethics work.’ In an increasingly datafied research environment, identifiability gains a new temporal and spatial dimension, especially in regard to genomic data. In this paper, we analyze how genomic identifiability is considered as a specific data issue in a recent controversial case: publication of the genome sequence of the HeLa cell line. Considering developments in the sociotechnological and data environment, such as big data, biomedical, recreational, and research uses of genomics, our analysis highlights what it means to be (re-)identifiable in the postgenomic era. By showing how the risk of genomic identifiability is not a specificity of the HeLa controversy, but rather a systematic data issue, we argue that a new conceptualization is needed. With the notion of post-identifiability as a sociotechnological situation, we show how past assumptions and ideas about future possibilities come together in the case of genomic identifiability. We conclude by discussing how kinship, temporality, and openness are subject to renewed negotiations along with the changing understandings and expectations of identifiability and status of genomic data.
Stichwort
Genomic identifiabilityHenrietta LacksPost-identifiabilityPostgenomicsPrivacyInfrastructures
Objekt-Typ
Sprache
Englisch [eng]
Persistent identifier
Erschienen in
Titel
BioSocieties
ISSN
1745-8552
Erscheinungsdatum
2023
Publication
Springer Science and Business Media LLC
Erscheinungsdatum
2023
Zugänglichkeit
Rechte
Rechteangabe
© The Author(s) 2023
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