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Post-identifiability in changing sociotechnological genomic data environments.

Kaya Akyüz1,2, Melanie Goisauf1,2, Gauthier Chassang3,4

  • 1Department of Science and Technology Studies, University of Vienna, Universitätsstraße 7/Stiege II/6, Stock (NIG), 1010 Vienna, Austria.

Biosocieties
|June 26, 2023
PubMed
Summary

Genomic data identifiability presents complex challenges beyond individual privacy. The HeLa genome case reveals the need for a new concept, "post-identifiability," to understand evolving genomic data risks.

Keywords:
Genomic identifiabilityHenrietta LacksInfrastructuresPost-identifiabilityPostgenomicsPrivacy

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Area of Science:

  • Biomedical research
  • Genomic data science
  • Sociotechnology

Background:

  • Biomedical research data practices often assume normative privacy standards and require 'ethics work.'
  • The increasing datafication of research, particularly with genomic data, introduces new temporal and spatial dimensions to identifiability.
  • Existing frameworks struggle to address the complex nature of identifiability in the postgenomic era.

Purpose of the Study:

  • To analyze genomic identifiability as a data issue using the controversial HeLa cell line genome publication.
  • To explore the implications of big data, diverse genomic applications (biomedical, recreational, research), and sociotechnical shifts on identifiability.
  • To propose a new conceptualization, 'post-identifiability,' to address contemporary genomic data challenges.

Main Methods:

  • Case study analysis of the HeLa cell line genome publication.
  • Examination of sociotechnological and data environment developments (big data, genomics).
  • Conceptual analysis of identifiability in the postgenomic era.

Main Results:

  • Genomic identifiability risks are not unique to the HeLa controversy but represent a systematic data issue.
  • The HeLa case exemplifies how past assumptions and future possibilities converge in genomic identifiability.
  • The concept of 'post-identifiability' captures the sociotechnological situation of genomic identifiability.

Conclusions:

  • A new conceptualization of 'post-identifiability' is necessary to understand genomic data risks.
  • Kinship, temporality, and openness require renegotiation in light of evolving understandings of genomic data identifiability and status.
  • The study highlights the need for updated frameworks to manage privacy and ethical considerations in genomic research.