Work With, Not In: Six Bioethics Recommendations to Promote Anti-Colonial Community Engagement in Population-Based Global Health Research
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Date
2023-11-20
Authors
Getz, Madeleine
Journal Title
Journal ISSN
Volume Title
Publisher
University of Oregon
Abstract
Global health survey research regularly confers benefits to NGOs, scholars, governments, and aid organizations and while it is intended to improve population health, the direct benefits to individuals and communities are often excluded from published works and/or not considered in study designs and approaches. This exclusion, which is particularly pernicious for Indigenous peoples and marginalized groups, is increasingly being recognized as the ongoing legacy of global health’s historically colonial practices, and actively hinders the pursuit of global health equity. Collaboration and community engagement are potential avenues for addressing this injustice, yet these approaches require planning and strategic intention. We draw on our collective research experience and the ongoing dialogue in the field of human biology to propose the following six recommendations to increase future studies’ community engagement and investment: 1) include local specialists and community members at every level of project leadership; 2) apply culturally informed bioethics frameworks; 3) recognize the study’s responsibility to return health information to participants, and to do so in a way that builds individual and community strengths and affirms and strengthens existing care and support, including Indigenous and traditional healing systems; 4) invest in local healthcare, research, and community infrastructure; 5) make study results and deidentified data available to both
participants and community researchers; and, 6) work within data frameworks that respect community sovereignty. We then undertook a review of global health surveys using our recommendations as evaluation criteria; here, we present an overview of six surveys to illustrate challenges and opportunities. This paper demonstrates an ongoing need to address community rights and benefits, as well as contributes to a growing body of work within global health and allied fields to decolonize research. The framework presented here serves as a starting point for elaboration and critique. Global health’s pursuit of health equity and decolonization as both an academic and service-based discipline relies on implementation of a critical, culturally informed bioethics framework that centers community engagement.
This thesis includes co-authored material.
Description
52 pages
Keywords
anthropology, global health, community engagement, anti-colonialism, bioethics