Post-identifiability in changing sociotechnological genomic data environments

Kaya Akyüz, Melanie Goisauf, Gauthier Chassang, Łukasz Kozera, Signe Mežinska, Olga Tzortzatou-Nanopoulou, Michaela Th Mayrhofer

Publications: Contribution to journalArticlePeer Reviewed

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.
Original languageEnglish
Pages (from-to)204-231
Number of pages28
JournalBioSocieties
Volume19
Issue number2
DOIs
Publication statusPublished - Jun 2024

Austrian Fields of Science 2012

  • 509017 Social studies of science
  • 106014 Genomics
  • 504020 Medical sociology

Keywords

  • Genomic identifiability
  • Henrietta Lacks
  • Infrastructures
  • Post-identifiability
  • Postgenomics
  • Privacy

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