Scientific studies with Indigenous Peoples have sometimes been termed “helicopter research” due to their extractive, if not exploitative, nature. Researchers enter communities, gather data and other materials for their projects, and complete their investigations in far-removed labs without meaningful benefits returning to their hosts. Indigenous Peoples’ concerns about this unidirectional transfer of value have only been amplified with advances in genomics as their communities become prime targets for research, especially given the field’s needs for genetic diversity. To check exploitative practices and foster reciprocity, Indigenous Peoples in the US have exercised their sovereignty to pass laws and develop policy to govern research on their lands and with their members. This presentation will discuss findings from an analysis of research governance documents from over 20 Indigenous governments, focusing especially on their expectations and requirements around ethical and beneficial engagement, including with genomic science. The presentation will also outline governance frameworks (e.g., UN Declaration on the Rights of Indigenous Peoples, CARE Principles for Indigenous Data Governance) with the potential to extend and apply those expectations and requirements in research settings and institutions beyond the legal jurisdiction of Indigenous governments. Such frameworks are key to bridging governance gaps in the high tech, fast-paced, complex field of genomic science, thereby supporting the development of ethical, mutually beneficial relationships between researchers and Indigenous Peoples.
Authors: Ibrahim Garba, University of Arizona; Rebecca Plevel, University of South Carolina; Stephanie Carroll, University of Arizona; Nanibaa' Garrison, University of California, Los Angeles
