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Anticipatory governance in biobanking: security and risk management in digital health

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posted on 2023-06-09, 23:42 authored by Dagmar RychnovskaDagmar Rychnovska
Although big-data research has met with multiple controversies in diverse fields, political and security implications of big data in life sciences have received less attention. This paper explores how threats and risks are anticipated and acted on in biobanking, which builds research repositories for biomedical samples and data. Focusing on the biggest harmonisation cluster of biomedical research in Europe, BBMRI-ERIC, the paper analyses different logics of risk in the anticipatory discourse on biobanking. Based on document analysis, interviews with ELSI experts, and field research, three types of framing of risk are reconstructed: data security, privacy, and data misuse. The paper finds that these logics downplay the broader social and political context and reflects on the limits of the practices of anticipatory governance in biobanking. It argues that this regime of governance can make it difficult for biobanks to address possible future challenges, such as access to biomedical data by authorities, pressures for integrating biobank data with other type of personal data, or their use for profiling beyond medical purposes. To address potential controversies and societal implications related to the use of big data in health research and medicine, the paper suggests to expand the vocabulary and practices of anticipatory governance, in the biobanking community and beyond.

History

Publication status

  • Published

File Version

  • Published version

Journal

Science and Engineering Ethics

ISSN

1353-3452

Publisher

Springer

Issue

3

Volume

27

Page range

1-18

Article number

a30

Department affiliated with

  • International Relations Publications

Full text available

  • Yes

Peer reviewed?

  • Yes

Legacy Posted Date

2021-04-23

First Open Access (FOA) Date

2021-04-23

First Compliant Deposit (FCD) Date

2021-04-23

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