Rethinking Risks and Benefits in Stakeholder-Engaged Research: Lessons from HIV, Substance Use, and Sexual Health Research with Marginalized Communities

In Emily E. Anderson (ed.), Ethical Issues in Community and Patient Stakeholder–Engaged Health Research. Springer Verlag. pp. 197-217 (2023)
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Abstract

In this chapter, we discuss the ways in which the weighing of risks and benefits in stakeholder engaged research is similar and different from other forms of research involving human ‘subjects.’ Drawing on HIV community-based research (CBR), we consider established risks, such as physical and emotional harms that may impact individual research participants as well as social harms that may impact individuals, organizations and coalitions, and entire communities. We consider how the active involvement of diverse stakeholders, with varying degrees of influence and power, can complicate traditional understandings of risks and benefits and raise questions about academic ethics and social justice.

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