Data sharing across biobanks: epistemic values, data mutability and data incommensurability

Ipek Demir, Madeleine J. Murtagh*

*Corresponding author for this work

Research output: Contribution to journalArticle (Academic Journal)peer-review

8 Citations (Scopus)

Abstract

Despite the centrality of epistemic issues in biobank knowledge generation, there is currently a lacuna in research addressing the epistemic assumptions of biobank science and data sharing. The article addresses this lacuna. Using the insights of philosophical and sociological analysis, we examine standardization and harmonization and central challenges biobank data-sharing faces. We defend two central epistemic values, namely spatial and temporal translatability and epistemic adequacy which foster effective biobank knowledge generation. The first refers to the way in which biobank data need to be re-usable and re-purposable by bioscience researchers who did not create them. Given the perennial issues of data mutability and incommensurability, we also propose epistemic adequacy. In uncovering the social and epistemic foundations of biobank science, we emphasize issues essential for achieving effective and transparent biobank practice and productive communication and engagement with the public about the nature, potential and limits of biobanks.

Original languageEnglish
Pages (from-to)350-365
Number of pages16
JournalNew Genetics and Society
Volume32
Issue number4
DOIs
Publication statusPublished - 1 Dec 2013

Keywords

  • biobank data sharing
  • epistemic values
  • incommensurability
  • ETHICS
  • TRANSLATION
  • DATASHIELD
  • GENETICS
  • MATTERS
  • SCIENCE
  • HEALTH
  • TIME

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