How ownership rights over microorganisms affect infectious disease control and innovation: A root-cause analysis of barriers to data sharing as experienced by key stakeholders

Carolina dos S. Ribeiro*, Martine Y. van Roode, George B. Haringhuizen, Marion P. Koopmans, Eric Claassen, Linda H.M. van de Burgwal

*Corresponding author for this work

Research output: Contribution to JournalArticleAcademicpeer-review

Abstract

Background Genetic information of pathogens is an essential input for infectious disease control, public health and for research. Efficiency in preventing and responding to global outbreaks relies on timely access to such information. Still, ownership barriers stand in the way of timely sharing of genetic data from pathogens, frustrating efficient public health responses and ultimately the potential use of such resources in innovations. Under a One Health approach, stakeholders, their interests and ownership issues are manifold and need to be investigated. We interviewed key actors from governmental and non-governmental bodies to identify overlapping and conflicting interests, and the overall challenges for sharing pathogen data, to provide essential inputs to the further development of political and practical strategies for improved data sharing practices. Methods & findings To identify and prioritize barriers, 52 Key Opinion Leaders were interviewed. A root-cause analysis was performed to identify causal relations between barriers. Finally, barriers were mapped to the innovation cycle reflecting how they affect the range of surveillance, innovation, and sharing activities. Four main barrier categories were found: compliance to regulations, negative consequences, self-interest, and insufficient incentives for compliance. When grouped in sectors (research institutes, public health organizations, supra-national organizations and industry) stakeholders appear to have similar interests, more than when grouped in domains (human, veterinary and food). Considering the innovation process, most of barriers could be mapped to the initial stages of the innovation cycle as sampling and sequencing phases. These are stages of primary importance to outbreak control and public health response. A minority of barriers applied to later stages in the innovation cycle, which are of more importance to product development. Conclusion Overall, barriers are complex and entangled, due to the diversity of causal factors and their crosscutting features. Therefore, barriers must be addressed in a comprehensive and integrated manner. Stakeholders have different interests highlighting the diversity in motivations for sharing pathogen data: prioritization of public health, basic research, economic welfare and/or innovative capacity. Broad inter-sectorial discussions should start with the alignment of these interests within sectors. The improved sharing of pathogen data, especially in upstream phases of the innovation process, will generate substantial public health benefits through increased availability of data to inform surveillance systems, as well as to allow the (re-)use of data for the development of medical countermeasures to control infectious diseases.

Original languageEnglish
Article numbere0195885
JournalPLoS ONE
Volume13
Issue number5
DOIs
Publication statusPublished - 2 May 2018

Funding

This study received funding from European Union’s Horizon 2020 Research and Innovation Program (https://ec.europa.eu/ programmes/horizon2020/), under grant agreement no 643476, through the COMPARE project (MK and GH). The funders of this study had no role in defining the study design; data collection, analysis and interpretation; writing of the report; and/or decision to submit the paper for publication. The authors had full access to all the data and the final responsibility for the decision to submit for publication. The authors greatly acknowledge all Key Opinion Leaders who participated in this study. Furthermore, we are grateful to the COMPARE Consortium for providing access to its network and supporting the performance of this study. We also acknowledge the European Commission for providing financial support to this study in the COMPARE project (http://www.compare-europe.eu) under the EU research program Horizon 2020.

FundersFunder number
Horizon 2020 Framework Programme643476
European Commission
European Geosciences Union
Horizon 2020

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