Data Access Governance
- Author
- Mahsa Shabani (UGent) , Adrian Thorogood and Madeleine Murtagh
- Organization
- Abstract
- Enabling researchers’ access to large volumes of health data collected in both research and healthcare settings can accelerate improvements in clinical practice and public health. Because the source and subject of those data are people, data access governance has been of concern to scientists, ethics and regulatory scholars, policy-makers and citizens worldwide. This chapter examines the topic of data access governance. We discuss the underlying values and goals of data access governance, focusing in particular on the scientific and social implications for open access and data sharing, on the rights and interests of data subjects as well as those of data producers, and on the ethical conduct of data sharing. We then present existing data access arrangements of organisations and repositories that exemplify varying modes of good practice. We argue these models exemplify the tension between promoting open access to databases on the one hand, and, on the other, protecting the rights and interests of the parties involved, including data subjects, researchers, funding organizations and commercial entities. We suggest that principles of transparency, fairness and proportionality in consideration of all stakeholders’ interests and values is key to achieving this balance.
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Citation
Please use this url to cite or link to this publication: http://hdl.handle.net/1854/LU-8711841
- MLA
- Shabani, Mahsa, et al. “Data Access Governance.” The Cambridge Handbook of Health Research Regulation, edited by Graeme Laurie et al., Cambridge University Press, 2021, pp. 187–96, doi:10.1017/9781108620024.023.
- APA
- Shabani, M., Thorogood, A., & Murtagh, M. (2021). Data Access Governance. In G. Laurie, E. Dove, A. Ganguli-Mitra, C. McMillan, E. Postan, N. Sethi, & A. Sorbie (Eds.), The Cambridge handbook of health research regulation (pp. 187–196). https://doi.org/10.1017/9781108620024.023
- Chicago author-date
- Shabani, Mahsa, Adrian Thorogood, and Madeleine Murtagh. 2021. “Data Access Governance.” In The Cambridge Handbook of Health Research Regulation, edited by Graeme Laurie, Edward Dove, Agomoni Ganguli-Mitra, Catriona McMillan, Emily Postan, Nayha Sethi, and Annie Sorbie, 187–96. Cambridge University Press. https://doi.org/10.1017/9781108620024.023.
- Chicago author-date (all authors)
- Shabani, Mahsa, Adrian Thorogood, and Madeleine Murtagh. 2021. “Data Access Governance.” In The Cambridge Handbook of Health Research Regulation, ed by. Graeme Laurie, Edward Dove, Agomoni Ganguli-Mitra, Catriona McMillan, Emily Postan, Nayha Sethi, and Annie Sorbie, 187–196. Cambridge University Press. doi:10.1017/9781108620024.023.
- Vancouver
- 1.Shabani M, Thorogood A, Murtagh M. Data Access Governance. In: Laurie G, Dove E, Ganguli-Mitra A, McMillan C, Postan E, Sethi N, et al., editors. The Cambridge handbook of health research regulation. Cambridge University Press; 2021. p. 187–96.
- IEEE
- [1]M. Shabani, A. Thorogood, and M. Murtagh, “Data Access Governance,” in The Cambridge handbook of health research regulation, G. Laurie, E. Dove, A. Ganguli-Mitra, C. McMillan, E. Postan, N. Sethi, and A. Sorbie, Eds. Cambridge University Press, 2021, pp. 187–196.
@incollection{8711841,
abstract = {{Enabling researchers’ access to large volumes of health data collected in both research and healthcare settings can accelerate improvements in clinical practice and public health. Because the source and subject of those data are people, data access governance has been of concern to scientists, ethics and regulatory scholars, policy-makers and citizens worldwide. This chapter examines the topic of data access governance. We discuss the underlying values and goals of data access governance, focusing in particular on the scientific and social implications for open access and data sharing, on the rights and interests of data subjects as well as those of data producers, and on the ethical conduct of data sharing. We then present existing data access arrangements of organisations and repositories that exemplify varying modes of good practice. We argue these models exemplify the tension between promoting open access to databases on the one hand, and, on the other, protecting the rights and interests of the parties involved, including data subjects, researchers, funding organizations and commercial entities. We suggest that principles of transparency, fairness and proportionality in consideration of all stakeholders’ interests and values is key to achieving this balance.}},
author = {{Shabani, Mahsa and Thorogood, Adrian and Murtagh, Madeleine}},
booktitle = {{The Cambridge handbook of health research regulation}},
editor = {{Laurie, Graeme and Dove, Edward and Ganguli-Mitra, Agomoni and McMillan, Catriona and Postan, Emily and Sethi, Nayha and Sorbie, Annie}},
isbn = {{9781108620024}},
language = {{eng}},
pages = {{187--196}},
publisher = {{Cambridge University Press}},
series = {{Cambridge Law Handbooks}},
title = {{Data Access Governance}},
url = {{http://doi.org/10.1017/9781108620024.023}},
year = {{2021}},
}
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