The commercialization of biospecimens from Indigenous Peoples: A scoping review of benefit-sharing

Abstract

BackgroundThere is ongoing and increasing interest in the commercialization of biospecimen-derived products from Indigenous Peoples. Discourse on benefit-sharing specifically in the context of the commercialization of Indigenous Peoples biospecimens are currently lacking. A better understanding of the potential ethical imperatives is in need of exploration on this emerging topic. This review sought to elucidate through categorization the current discourse in the peer-reviewed literature on the commercialization of Indigenous Peoples' biospecimens from a benefit-sharing perspective.MethodsA scoping review methodology was utilized to perform a search of PubMed, CINAHL, Embase and Google Scholar. A two-stage screening process was used to assess the relevance of any included articles with subsequent manual open coding of articles. Content analysis was applied to identify the main categories and sub-categories within the article data.ResultsThirty-three articles met the inclusion criteria for analysis. Four overarching categories from the included articles were identified regarding the most common discourse on the commercialization of Indigenous Peoples' biospecimens from a benefit-sharing perspective, including: exploitation through biocolonialism, sovereignty and Indigenous rights, ethical considerations for benefit-sharing, and guidelines and standards concerns.ConclusionThis scoping review highlighted the crucial need to keep Indigenous communities at the center of research projects, ensuring any benefits, advancement, and potential commercial profits are returned to communities through clear and ethical agreements. We encourage all research institutions and institutional ethical review bodies to better clarify the collective needs and interests of Indigenous communities while centering their sovereignty and rights within the research process as it pertains to potential biospecimen product commercialization.

Why community consultation matters in genomic research benefit-sharing models

“…Scholars and governing bodies have made repeated calls for benefit sharing in biomedical research as a means of promoting greater reciprocity in the research relationship ( Bedeker et al 2022 ; Tone-Pah-Hote and Redvers 2022 ). Specifically, the “Sharing of Benefits” article of UNESCO's 2005 Universal Declaration on Bioethics and Human Rights and, more recently, the 2022 WHO Science Council Report both make calls for the generalized sharing of benefits and knowledge from genomic research to the broader public.…”

Editorial: Toward a better understanding and application of benefit sharing in genomic and global health research

“…Over the past 2 decades an international consensus has been built highlighting the need for both compensatory and distributive justice through benefit sharing with research participants and their communities ( Hugo ethics committee, 2000 ). Although initially applied in regard to therapeutic benefit sharing from from clinical trials, this consensus has expanded to encompass benefits across all biomedical research including: genetic and non-genetic human subject research ( White, 2007 ; Dauda and Dierickx, 2017 ; Bedeker et al, 2022 ), human pathogen research ( Rourke, 2017 ), research involving access and use of biodiversity as well research involving Indigenous Knowledges ( Heinrich et al, 2020 ; Tone-Pah-Hote and Redvers, 2022 ). It has been noted that existing national and international guidelines have failed to offer practical and transparent guidance to support biomedical researchers to share the benefits from their research ( Sudoi et al, 2021 ).…”