Risk assessment co-development across disciplines and borders
Understanding Ugandan stakeholder contributions to gene drive risk assessment
Project goals
If gene drives are developed to address malaria, countries in Sub-Saharan Africa will need to develop new regulatory frameworks, and these frameworks should not just be expert-led but be sensitive to a wide range of voices and knowledges.
Risk assessment is one vital step in technology development, yet we know very little about how to ‘open’ it up to stakeholders; where attempts to do this have been made, risk decisions have been highly contested. In this project, we are examining how policy makers, scientists and social scientists in Uganda think about who should be involved in risk assessment of gene drive mosquitoes, and how that involvement might be supported.
FUNDER
British Academy Knowledge Frontiers Call (2018)
What we did
We interviewed 19 expert stakeholders – those who had knowledge of the human health, political, economic and ethical context of malaria and the development and potential testing of gene drive mosquitoes in Uganda. We wanted to understand their hopes and concerns for gene drive mosquitoes.
What we learned
We found stakeholder hopes and concerns fell into three themes: (1) ability of gene drive mosquitoes to prevent malaria infection; (2) impacts of gene drive testing and deployment; and, (3) governance. Stakeholder hopes fell almost exclusively into the first theme while concerns were spread across all three.
Our study demonstrated that local stakeholders are able and willing to contribute relevant and important knowledge to the development of risk frameworks. Importantly, risk decision-making for gene drive mosquitoes in Uganda must be grounded in the local context if it is to be robust, meaningful and legitimate. Decisions about whether or not to release gene drive mosquitoes as part of a malaria control programme will need to consider the assessment of both the risks and the benefits of gene drive mosquitoes within a particular social, political, ecological, and technological context. Just as with risks, benefits - and importantly, the conditions that are necessary to realize them - must be identified and debated in Uganda and its neighbouring countries.
Activities and outputs
Ledingham K, Opesen C, Hartley S and Neema S 2023 Situating the social sciences in responsible innovation in the Global South: the case of gene drive mosquitoes Journal of Responsible Innovation.
Hartley S, Kokotovich A and McCalman C 2022 Engagement in risk assessment: Prescription and practice in the international development of gene drive risk assessment guidelines 2014-2020 Regulation and Governance
Hartley S, Smith RDJ, Kokotovich A, Opesen C, Habtewold T, Ledingham K, Raymond B & Rwabukwali C 2021 Ugandan stakeholder hopes and concerns about gene drive mosquitoes for malaria control: new directions for gene drive risk governance Malaria Journal 20
Long KC, Alphey L, Annas GJ, Bloss CS, Campbell KJ, Champer J ... & Akbari OS 2020 Core commitments for field trials of gene drive organisms Science 370(6523) 1417-1419
Qualitative data from the 19 interviews with Ugandan stakeholders was anonymised, contextualised, and archived with UK Data Service in July 2020
Talks
Hartley (PI) Stakeholder engagement and risk assessment: What are the lessons for gene drive research engagement? Foundations for the National Institutes of Health, GeneConvene Global Collaborative Webinar 2021
Hartley (PI) and Opesen (postdoc) invited to provide expert advice to African Institute for Development Policy on the political economy of emerging health technologies in Sub-Saharan Africa as they developed policy on gene drive mosquitoes in Africa 2021
Hartley (PI) Guidelines for gene drive risk assessment as a key site of governance, National Institutes of Health, Novel and Exceptional Technology and Research Advisory Committee (NExTRAC) meeting Session IV: Strategies for Assessing Risk and Benefit for Field Releases 2020
Opesen (postdoc) Public and stakeholder engagement in risk assessment for gene drive technology as a form of malaria control in Uganda: Towards Inclusivity, Workshop: A social science agenda for gene drive research, Makerere University 2020
Hartley (PI) Co-development in Gene Drive, Target Malaria Ethics Advisory Meeting, Ghana 2019
Hartley (PI) Gene Drive Governance: Science in search of responsibility, Roslin Institute 2019
Ledingham (CoI) Global status of risk assessment frameworks for gene drive to the Nordic Council of Ministers workshop, Tallin, Estonia 2019
Hartley (PI) Understanding the academic debate on genome editing in animals The Royal Society, London 2019
Project Team
