Abstract
Progress in gene-drive research has stimulated discussion and debate on ethical issues including community engagement and consent, policy and governance, and decision-making involved in development and deployment. Many organizations, academic institutions, foundations, and individual professionals have contributed to ensuring that these issues are considered prior to the application of gene-drive technology. Central topics include co-development of the technology with local stakeholders and communities and reducing asymmetry between developers and end-users. Important questions include with whom to conduct engagement and how to define community acceptance, develop capacity-building activities, and regulate this technology. Experts, academics, and funders have suggested that global frameworks, standards, and guidelines be developed to direct research in answering these important questions. Additionally, it has been suggested that ethical principles or commitments be established to further guide research practices. The challenging and interesting contradiction that we explore here is that the vast majority of these conversations transpire with little or no input from potential end-users or stakeholders who, we contend, should ultimately determine the fate of the technology in their communities. The question arises, whose concerns regarding marginalization, disempowerment, and inequity should be included in discussions and decisions concerning how inequities are perceived and how they may be addressed? At what stage will true co-development occur and how will opinions, perspectives and knowledge held by low-income country stakeholders be applied in determining answers to the questions regarding the ethics being debated on the academic stage? Our opinion is that the time is now.
Highlights
In addition to publications, there are institutions and organizations exploring these questions through workshops and webinars; gathering experts and academics together to discuss perspectives and ideas on the topic
In 2021 the Gene Convene Global Collaborative hosted a series of virtual panel discussions entitled “Considering the case of Gene Drive Technologies Through Social Science Theories on Stakeholder Engagement” and a second session under the heading, “Unsettled Ethical Issues in Gene Drive Research.”
How do we develop guidelines for best practice and recommendations for ethical engagement and inclusion without partnering with those who are closest to the values and priorities of communities and stakeholder groups that will be affected most by the technology? True belief in co-development calls for codevelopment of guidelines, which require collaborative work and “authentic partnership” with a much broader group of stakeholders
Summary
The University of California Irvine Malaria Initiative (UCIMI), a not-for-profit research collaborative, has been actively involved in many of the discussions, workshops, and seminars addressing the application of gene-drive technology. True belief in co-development calls for codevelopment of guidelines, which require collaborative work and “authentic partnership” (participants share in the conceptualization, development, and sharing/publication) with a much broader group of stakeholders This practice begins with an acknowledgement and commitment from the global gene-drive research community to apply co-development practice in the evolution of published guidelines and recommendations, and to place value and trust in the critical perspectives and values of these stakeholder groups. The expansion of knowledge engagement is an essential first step in the facilitation of meaningful co-development of guidelines for potential application Without making these efforts, the recommended practices and considerations remain largely reflective of the specific values and ethical concerns of academic experts and institutions, maintaining an imbalance of power and influence. It is up to the current influencers (funders, institutions, and academic experts) in the gene-drive community to put into action the practice of inclusion, co-development, and true engagement that we have articulated as a priority
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