The ethics of data interoperability: Mapping problems and strategies in biomedical data and beyond

Abstract

Data interoperability poses unique ethical challenges across a range of academic, industrial, and governmental implementations of data systems. Central to data interoperability is the design of systems and protocols for exchanging or integrating data from different initial source domains. Data interoperability is often regarded as necessary for carrying out tasks between different organizations and suborganizations as well as for ensuring secondary use of data for research purposes. However, interoperability poses a number of ethical problems whose contours can prove especially challenging in comparison to how ethical harms take hold at other moments of the data life cycle (such as algorithmic processing or results dissemination). Taking biomedical data interoperability as a focal domain, this article provides an overview of data interoperability, maps the central ethical harms that may challenge interoperability projects, and proposes a response to these problems through an approach rooted in philosophical pragmatism. Pragmatist responses to both individual and structural harms of interoperability are presented through three companion strategies: shared standards, manual data curation, and meticulous data documentation.

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