Stakeholder Engagement in HIV Cure Research: Normative and Practical Applications of Deliberative Approaches

Adriane Gelpi

The rise of research to cure HIV has sparked calls for including stakeholder engagement as a part of this research. Stakeholders (including patients, community members, scientists, disease advocates, pharmaceutical representatives and government officials) have long played a pivotal role in HIV control due to the potential of their involvement to increase the fairness, legitimacy and effectiveness of decisions. Stakeholder engagement takes many different forms, which can be broadly categorized as either deliberative or nondeliberative. Today, the new field of HIV cure research offers the opportunity, not only to reassess the comparative value of deliberative and nondeliberative modes of stakeholder engagement, but to do so specifically in the context of HIV cure research.  This paper focuses on deliberative approaches in the context of HIV cure research. The analysis proceeds in four steps: Part I clarifies concepts by outlining a typology of stakeholders and forms of engagement; Part II analyzes the advantages and disadvantages of deliberative approaches; Part III demonstrates how deliberative approaches to stakeholder engagement can better facilitate discussion of two critical issues in early-stage HIV cure research: stakeholder participation in clinical trials and communication with stakeholders in the face of scientific uncertainty. Part IV identifies additional challenges that will become salient as research into HIV cure advances and that architects of stakeholder engagement will need to address. Given the momentum surrounding HIV cure research, this analysis of deliberative approaches to stakeholder engagement represents a critical and timely step toward developing more ethical and effective practices.