An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research

PURPOSE: This investigation was undertaken to define the barriers to Indigenous peoples participating in biobanking and genomic research. METHODS: A literature review was conducted to identify studies reporting on the experience of Indigenous peoples with biobanking, tissue banking, and genomic research. Studies pertaining to organ transplantation or blood donation for transfusion were excluded. The databases searched were MEDLINE, EMBASE, PubMed, Web of Science, and Google Scholar, with all literature available until the search date of June 1, 2018, included. The reference lists of all included papers, as well as related review articles, were manually searched to identify additional relevant studies. An inductive approach was used to identify common themes. RESULTS: Seventeen publications discussed the experiences of New Zealand Māori (n = 2), Aboriginal and Torres Strait Islanders (n = 3), Native Hawaiian (n = 4), Native Alaskan (n = 2), American First Nation (n = 2), or multiple ethnicities (n = 4). Across all Indigenous peoples, four themes emerged: land, ancestors, culture, and bodily substances are powerfully interconnected and can act on each other; tissue and blood can provide important information (both Western and traditional) about a person; the ownership of specimens—custodians, trustees, or guardians; and the beneficence of the researchers and research team. CONCLUSION: Indigenous communities, like Western populations, are concerned with issues pertaining to handling, treatment, and ownership of tissue as well as knowledge gained from specimen analysis. Unlike many Western populations, Indigenous communities have retained a strong sense of cultural connection to ancestors and traditional lands and view biologic specimens as inseparable from these things.