Abstract
Social justice has been identified as a foundational moral commitment for global health research ethics. Yet what a commitment to social justice means for community engagement in such research has not been critically examined. This paper draws on the rich social justice literature from political philosophy to explore the normative question: What should the ethical goals of community engagement be if it is to help connect global health research to social justice? Five ethical goals for community engagement are proposed that promote well-being, agency, and self-development, particularly for those considered disadvantaged and marginalized. The paper also considers how key terms used in the proposed goals should be defined using existing theories of health and social justice. This analysis is done to give global health researchers and their partners a better idea of what the ethical goals mean. Patterns of convergence amongst different theories are identified that support relying on particular definitions of key terms.
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Notes
Powers and Faden’s concept of self-determination strongly overlaps with the concept of individual agency described by the capability approach. They define self-determination as leading a “self-directed” life that is guided and shaped by one’s own values and choices (Powers and Faden 2006, 26).
Agency and self-determination are defined similarly by capability and relational egalitarian theorists.
Knowledge democracy and cognitive justice recognize the right of different systems of knowledge to exist as part of dialogue and debate. They affirm the epistemological diversity of the world as a source of ideas, values, and practices that can further global social emancipation and emphasize that the knowledge of those considered disadvantaged and oppressed, in particular, should be engaged in this process. These concepts draw attention to inequalities in the knowledge that is valued and produced in today’s world, e.g., economic knowledge over other disciplines; “Northern” epistemologies over “Southern” epistemologies; technical and quantitative measures over qualitative measures rooted in lived experiences; and expert knowledge over local and indigenous ways of knowing. They call for such inequalities to be rectified (Tandon et al. 2009; Visvanathan 2009; Rowell and Hong 2017; ISSC, IDS and UNESCO 2016).
A convergence approach is a research method that entails comparing relevant theories and conceptual approaches with the overall aim of identifying points of convergence and divergence and then pulling together the points of convergence to propose a practical solution to an identified problem (Pound and Campbell 2015).
Groups who face a lack of respect and obstacles to achieving well-being due to, for example, being a particular gender, race, caste, or sexual orientation (Powers and Faden 2006).
Accounts of health and social justice also set rules above the threshold. Three options here are rules that affirm: 1) inequalities above the threshold are not morally significant, 2) inequalities above the threshold are less morally significant than those below the threshold, or 3) another principle applies to evaluate justice above the threshold (e.g., respect or moral equality) (Axelsen and Nielsen 2017). Where the second option is adopted, accounts identify relative disadvantage above the threshold as morally bad. They would support doing global health research that focuses on the needs of the relatively disadvantaged above the threshold but would call for such research to be done largely after the given population has reached the threshold level of health. In contrast, where the first option is adopted, accounts do not consider inequalities above the threshold as morally significant and would permit relative disadvantage. Global health research to address the needs of the relatively disadvantaged would not be required as a matter of justice.
“Biological endowments and needs” refer to physical and mental endowments and extra nutritional needs (e.g., during pregnancy). “Agency and conversion skills” refer to one’s ability to act to address health concerns, the ability to convert biological endowments, physical and social conditions into beings and doings that promote health. “Physical conditions” refer to the physical environment and its features. “Social conditions” refer to basic social institutions, processes, values, and relative social inequalities, including but not limited to poor access to healthcare and services; inadequate nutrition; unsafe and insecure employment; housing conditions; experience of discrimination, disrespect, and poor social cohesion; and income inequality (Venkatapuram 2011).
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Acknowledgements
The author would like to thank Professor Lynn Gillam (University of Melbourne) for providing comments and feedback on earlier versions of this paper.
Funding
BP is currently supported by an Australian Research Council (ARC) Discovery Early Career Researcher Award (Award No. DE170100414). The contents of this article are solely the responsibility of the author and do not reflect the views of the ARC.
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Pratt, B. Social Justice and the Ethical Goals of Community Engagement in Global Health Research. Bioethical Inquiry 16, 571–586 (2019). https://doi.org/10.1007/s11673-019-09948-8
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DOI: https://doi.org/10.1007/s11673-019-09948-8