The boundary problem: Defining and delineating the community in field trials with gene drive organisms

Author:

de Graeff Nienke12ORCID,Pirson Isabelle3,van der Graaf Rieke1ORCID,Bredenoord Annelien L.14,Jongsma Karin R.1ORCID

Affiliation:

1. Department of Bioethics & Health Humanities, Julius Center for Health Sciences and Primary Care University Medical Center Utrecht, Utrecht University Utrecht The Netherlands

2. Department of Medical Ethics & Health Law Leiden University Medical Center, Leiden University Leiden The Netherlands

3. Rathenau Institute The Hague The Netherlands

4. Erasmus School of Philosophy Erasmus University Rotterdam The Netherlands

Abstract

AbstractDespite widespread and worldwide efforts to eradicate vector‐borne diseases such as malaria, these diseases continue to have an enormous negative impact on public health. For this reason, scientists are working on novel control strategies, such as gene drive technologies (GDTs). As GDT research advances, researchers are contemplating the potential next step of conducting field trials. An important point of discussion regarding these field trials relates to who should be informed, consulted, and involved in decision‐making about their design and launch. It is generally argued that community members have a particularly strong claim to be engaged, and yet, disagreement and lack of clarity exist about how this “community” should be defined and delineated. In this paper, we shed light on this “boundary problem”: the problem of determining how boundaries of inclusion and exclusion in (GDT) community engagement should be drawn. As our analysis demonstrates, the process of defining and delineating a community is itself normative. First, we explicate why it is important to define and delineate the community. Second, we demonstrate that different definitions of community are used and intermingled in the debate on GDTs, and argue in favor of distinguishing geographical, affected, cultural, and political communities. Finally, we propose initial guidance for deciding who should (not) be engaged in decision‐making about GDT field trials, by arguing that the definition and delineation of the community should depend on the rationale for engagement and that the characteristics of the community itself can guide the effective design of community engagement strategies.

Funder

Stichting voor de Technische Wetenschappen

Publisher

Wiley

Subject

Health Policy,Philosophy,Health (social science)

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