Streamlining the ethical-legal governance of cross-border health data sharing during global health emergencies

Author:

Andanda Pamela1ORCID,Mlotshwa Langelihle2

Affiliation:

1. University of the Witwatersrand Johannesburg, South Africa

2. University of the Witwatersrand Johannesburg Oliver Schreiner School of Law, South Africa

Abstract

Global health emergencies often lead to a proliferation of health-related research and resultant data, which is shared across borders to help control the outbreak of disease and support decision-making regarding public health interventions. However, efforts to share data can be hindered by diverse international ethical and legal frameworks. The frameworks aim to govern coordinated processing, sharing and transfer of health data across borders thus placing burdens on researchers who are willing or obligated to share data. In this paper, we investigate ethical values and legal principles that can be applied to ensure a more streamlined approach in the governance of cross-border health data sharing during global health emergencies. A scoping review approach was used to better understand emerging evidence about issues related to the ethical and legal governance of cross-border health data sharing. We first highlight the challenges of sharing health data across borders. We then discuss how the challenges might be overcome through the application of ethical values and legal principles that have been identified in literature. This is followed by a proposal for possible ways of streamlining the governance of health data sharing from ethical and legal perspectives in a bid to better prepare for future global health emergencies and promote the responsible sharing of health data.

Funder

European Union

Publisher

SAGE Publications

Reference70 articles.

1. Abboud L, Cosgrove S, Kesisoglou I, et al. (2021) Summary of results: Case studies on barriers to cross-border sharing of health data for secondary use. TEHDAS consortium partners. Available at: https://tehdas.eu/app/uploads/2021/09/tehdas-summary-of-results-case-studies-on-barriers-to-sharing-health-data-2021-09-28.pdf (accessed 21 November 2023).

2. Academy of Science of South Africa (AASAf) (2021) Data for International Health Emergencies: Governance, Operations and Skills. Royal Society. Available at: https://royalsociety.org/-/media/about-us/international/g-science-statements/G7-data-for-international-health-emergencies-31-03-2021.pdf (accessed 10 April 2024).

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