The Privatization Of Health-Related Online Data And Its Methodological And Ethical Implications

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Whereas the availability and relative ease with which health-related online information can be provided, collected, and re-used have led to important debates regarding the meaning of informed consent in scientific research, less attention has been paid thus far to platform owners’ claims to ownership over such data. The tendency to privatize health-related online information has intensified since the adoption of the General Data Protection Regulation in the European Union in 2018. This paper explores the implications of such practices for STS scholars conducting online qualitative studies, as the acquisition of copyright by online platform owners on the information freely made available by users is often accompanied by the decision not to support third-party research. Drawing upon insights acquired from 30 health-related online platforms, selected using the Google index as relevance indicator, it argues that online platform owners are turning into important gatekeepers in regard to the opportunities that researchers have to use existing online data or to collect new data by directly engaging with online users. The ethical implications of this development are subsequently explored by focusing on the new types of inequality such gatekeeping practices can lead to, and on the new relationships that emerge between platform owners, different types of researchers, and medical institutions. The fact that information about procedures for the application and evaluation of research in such contexts is insufficient or altogether missing from the public domain leads to decreased transparency, verifiability, and accountability, thereby posing an important threat to the quality of scientific studies.

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Contributors

Contributed date

May 28, 2020 - 4:47am

Critical Commentary

This is an abstract for the EASST/4S 2020 open panel "Digital Experiments in the Making: Methods, Tools, and Platforms in the Infrastructuring of STS".