Indigenous sovereignty, data sourcing, and knowledge sharing for health

ABSTRACT

In this article, we consider the impacts of the COVID-19 pandemic on Indigenous Peoples (IPs) by reporting on information-gathering work across two non-governmental and Indigenous organisations to compensate where federal systems failed. Strategies IPs have employed to understand and respond to the pandemic, and described here, include: collaborative efforts across communities intra- and inter-nationally; open-source data platforms; and small-scale epidemiological research. Our review exposes the informational politics faced by Indigenous organisations and communities, and their struggle to pursue needed resources or protections while avoiding the critiques of ‘post-neoliberal’ and ‘science denialism’. We conclude by suggesting ways that Indigenous communities improve our understanding of their needs during public health crises, and maintain both informational and medical self-governance.

KEYWORDS:

• Indigenous
• COVID-19
• information
• open-source data
• crowd-sourcing

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 For example, the INPI Report for November 2021 acknowledges 65 Indigenous Peoples in Mexico but the public health data presented later in the same report is aggregated by states. IP statistics are embedded and overlapping within those state designations, making it impossible to determine their community-specific needs.

2 It is beyond the scope of this article to summarise the character and scope of Indigenous rights, the complexity of violations now recognised by the United Nations and other international bodies, or the relationship between these rights and Indigenous health. Key concerns include physical safety, territorial security, place-based communal sovereignty, reduced or dis-interest in capitalist or technological incorporation, inadequate access to public health infrastructures, invisibility within over-arching federal safety net systems, and limited networks of communication.