Restoring dignity to the marginalised as sovereign knowers
Power imbalances persist in research, prioritising the experience and knowledge of those with social, political, and economic power while silencing or misrepresenting others. This dynamic—which is intensified in global health due to its focus on vulnerable groups—perpetuates false assumptions about the silenced groups, inevitably ending in harms like inefficient and unjust resource allocation. Increasingly, the field asks: how can we centralise the most relevant voices and employ their expertise to guide practice? This issue of The Lancet Global Health contains two papers that generate what we hope will become seminal frameworks on this crucial question. But whose are the most relevant voices? To echo longstanding calls from feminist, Black, Indigenous, and low-income and middle-income country (LMIC) scholars, we believe that—when a marginalised population is being studied—the knowledge within that group should be centred and privileged at every research stage, from study design to use of the produced knowledge. In their Health Policy, Alice Bayingana and colleagues synthesise literature on knowledge practices to identify expectations for global health research that can best respect the dignity of marginalised people. Dignity refers to the respect that is intrinsically due to every person. Bayingana and colleagues specifically speak on epistemic dignity: that is, respect for people as knowers. They discuss four expectations: transparency (ie, consideration and declaration of researchers’ own worldviews and those of the marginalised groups, especially if differing); non-extraction (ensuring knowledge production primarily benefits those under study and minimises costs and harms to them); democratisation (allowing those being studied to lead decisions on what, how, and to what end research is done on or with them); and transformation (making disruption of structural, upstream causes of the problems studied the goal of knowledge production rather than downstream inequities and resultant behaviours). The considerations raised in this paper should give everyone involved in the knowledge production cycle food for thought. However, as raised by a Viewpoint in this issue, working to disrupt power imbalances from a position of relative power is not emotionally comfortable. As Katherine Collins, Kimberly Huyser, and Michelle Johnson-Jennings broach, non-indigenous researchers planning community-engaged research in Indigenous communities must respect that the Indigenous population has sovereignty in research and over any data generated. They outline important questions for any non-indigenous researcher to consider before embarking on a study in an Indigenous community, using an elegant metaphor of a canoe journey through Indigenous waters. Questions include how prepared the researcher is to relinquish academic freedoms when they clash with community priorities, and how likely they are to dedicate years to a project that might not yield typical academic rewards. This framework echoes that of Bayingana and colleagues in its stipulations that those from outside a community recognise that those within the community are the only true knowers; outsiders can bring skills and expertise but, ultimately, knowledge and agency should reside with the community. For our part, The Lancet Global Health remains mindful of these expectations in all work that we evaluate. In 2023, we went further to address this aim by asking authors of original research that we publish to submit an equitable partnership declaration (EPD) for publication alongside their study. The EPD form (appendix) asks detailed questions about the research partnerships in studies, exploring how the research affects and is shaped by researchers, communities, and environments in LMIC study settings. This pilot project has become a long-running initiative that we are proud to continue. At minimum, we hope that these questions improve the transparency of research we publish. Ambitiously, we also hope that answering these questions might prompt authors to consider other aspects—non-extraction, democratisation, and transformation—for future projects, to improve the dignity of marginalised groups. Overall, these frameworks illustrate the need for humility and receptiveness to feedback and redirection among those invited into a marginalised group for study, as well as respect for the group as the owners and creators of knowledge about themselves. These skills require critical introspection, which can be difficult. Nevertheless, they are an absolute necessity for anyone seeking to improve the health of a population with less privilege than themselves in any regard.
Restoring dignity to the marginalised as sovereign knowers, The Lancet Global Health, Volume 13, Issue 9, e1489
