Bridging the gap: returning genetic results to indigenous communities in Latin America

Front Genet. 2023 Nov 28:14:1304974. doi: 10.3389/fgene.2023.1304974. eCollection 2023.

Abstract

In response to inequality in access to genomics research, efforts are underway to include underrepresented minorities, but explicit (and enforcing) guidelines are mostly targeted toward the Global North. In this work, we elaborate on the need to return scientific results to indigenous communities, reporting the actions we have taken in a recent genomic study with Mapuche communities in Chile. Our approach acknowledged the social dynamics perpetuating colonial hierarchies. We framed genetic results to empower indigenous knowledge and communities' history and identities. A fundamental step in our strategy has been sharing the results with the communities before publishing the scientific paper, which allowed us to incorporate community perspectives. We faced the challenge of translating genetic concepts like admixture, emphasizing the distinction between identity and biology. To reach a broad and diverse audience, we disseminated the study results to single community members, cultural representatives, and high schools, highlighting the importance of the history of the region before the European contact. To facilitate results dissemination, we prepared didactic material and a report in Spanish written in non-specialized language, targeting a wider Latin American readership. This work illustrates the benefits of discussing scientific findings with indigenous communities, demonstrating that a collaborative and culturally sensitive approach fosters knowledge sharing and community empowerment and challenges power dynamics in genetic research. Bridging the gap between academia and indigenous communities promotes equity and inclusion in scientific endeavors.

Keywords: Chile; Global South; Latin America; ethics; genomics; indigenous communities.

Grants and funding

The author(s) declare financial support was received for the research, authorship, and/or publication of this article. CB and KS were supported by the URPP ‘‘Evolution in Action’’ of the University of Zurich and the NCCR Evolving Language, Swiss National Science Foundation Agreement #51NF40_180888. CB, EA-I, and KS were supported by the SNSF Sinergia project ‘‘Out of Asia’’ (grant number 183578). For the return expedition, the University of Zurich Graduate Campus (GRC) supported EA-I, and the Zurich Latin American Center (LZZ) supported both EA-I and CB. FM is funded by CIIR-FONDAP 15110006.