The American Journal of Bioethics | 2021
Deliberative Forums to Bolster Tribal Self-Determination
Abstract
In “Extending Research Protections to Tribal Communities,” Saunkeah et al. (2021) derive groupbased protections of sovereignty and solidarity from the Belmont Report’s value of respect for persons. While the authors propose “tribal research review committees” as the institutions that would advance sovereignty and solidarity, I offer an analysis of recent empirical evidence of deliberative opportunities performed in ANAI communities on the moral matters of biobanking and genetics research to show how more inclusive forms of engagement such as deliberative forums can support the realization of group-based interests in harm reduction and non-exploitation. By cultivating greater inclusivity and navigating disagreement in moderated spaces, deliberative bodies create the conditions in which decisions more accurately reflect the needs and interests of the community itself rather than those of a select, and potentially elite, few among them. These institutions, I argue, can help more robustly to realize the value of sovereignty alongside minimization of harms and exploitation in medical research on tribal populations at least to supplement the more expert-based oversight committees Saunkeah et al. endorse. I first explore the principles of deliberative democracy at play and, second, analyze the empirical experiments done in tribal populations around questions of medical study protocols and participation in scientific research given both historic and ongoing reasons for distrust and hesitation. I hope to offer some perspective in my capacity as a democratic theorist on how these important deliberative studies illuminate pathways for building group solidarity and protecting rights to sovereignty and self-determination. In contrast to electoral or representative democracy, deliberative democracy features systems or modes of interaction and participation in governance through “talking” and collaborating, rather than just voting and organizing. This more direct form of governance helps to equalize the distribution of political power in society by giving voice to the more marginalized and hearing the testimony of those whose lived experiences are crucial to policy and law making (Mansbridge 2015). Over the decades, deliberative democratic theorists have sought to clarify and justify the legitimacy of deliberative groups, such as Citizens Assemblies and Juries, to hold authority, or even at times replace legislatures (Sintomer 2019). In so doing, they have sought to elucidate both through philosophical argumentation and empirical experimentation the idealized ways they should do so, the goals they can achieve, and thus authority they should wield (Burkhalter, Gastil, and Kelshaw 2002). Part of this inquiry features explicating such details of deliberative forums as selection mechanisms for participation, methods of deliberation (such as through moderation and expert-guidance), decisionmaking mechanisms, how deliberative forums should operate in conjunction with preexisting institutions, and whether to use other tools of engagement, such as polling or broader societal deliberation (B€achtiger and Goldberg 2020). In the case of tribal communities’ rights to selfdetermination, deliberative engagement plays a crucial role because it allows members of the tribe to directly choose for themselves the values and protocols for protections, alongside demanding benefits, they seek from biomedical research participation. While current tribal IRBs include “community representatives,” they