ReviewJCO global oncology2020
An Integrative Review of the Barriers to Indigenous Peoples Participation in Biobanking and Genomic Research.
Review in JCO global oncology, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 26 papers, 1 of them a synthesis that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
26 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic literature review of Native American and Pacific Islanders' perspectives on health data privacy in the United States.Journal of the American Medical Informatics Association : JAMIA · 2020Pooled it
- Reporting and representation of population descriptors in public RNA-seq databases.Cell genomics · 2026Article
- From equity to solidarity: how care and relationality transform the debate on justice in genomics.Journal of community genetics · 2026Article
- Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review.BMC global and public health · 2024Article
- Native Hawaiian and Pacific Islander populations in genomic research.NPJ genomic medicine · 2024Review
- Use of Cognitive Interviews in the Development of a Survey Assessing American Indian and Alaska Native Adult Perspectives on Genetics and Biological Specimens.International journal of environmental research and public health · 2024Article
- When Biobanks Meet Religion: Association Between Religiosity and Attitudes of Polish Medical Students Toward Biobanking of Human Biological Material for Research Purposes.Journal of religion and health · 2024Article
- The Inclusion of Underrepresented Populations in Cardiovascular Genetics and Epidemiology.Journal of cardiovascular development and disease · 2024Review
- Culturally responsive strategies and practical considerations for live tissue studies in Māori participant cohorts.Frontiers in research metrics and analytics · 2024Article
- Cluster Donation: How Future Healthcare Professionals Bound Certain Types of Tissues and Biomedical Research and How It Affects Their Willingness to Donate.Healthcare (Basel, Switzerland) · 2023Article
- Genomics and inclusion of Indigenous peoples in high income countries.Human genetics · 2023Review
- Partnering with First Nations in Northern British Columbia Canada to Reduce Inequity in Access to Genomic Research.International journal of environmental research and public health · 2023Article
- Research-Related Stakeholders' Perspectives on Sociocultural Considerations in Biobanking Practice in South Africa.Biopreservation and biobanking · 2023Article
- Chronic Mercury Exposure andToxics · 2023Article
- Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US.Frontiers in research metrics and analytics · 2023Article
- Online Training as a Means to Improve the Understanding of Ethical, Legal, and Social Aspects of Biobanking Research: Stakeholder Perspectives from South Africa.Biopreservation and biobanking · 2022Article
- Who's included? The role of the Clinical Research Nurse in enabling research participation for under-represented and under-served groups.Journal of research in nursing : JRN · 2022Article
- Precision medicine research with American Indian and Alaska Native communities: Results of a deliberative engagement with tribal leaders.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- The commercialization of biospecimens from Indigenous Peoples: A scoping review of benefit-sharing.Frontiers in medicine · 2022Article
- Social differentiation of the perception and human tissues donation for research purposes.Frontiers in genetics · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThis investigation was undertaken to define the barriers to Indigenous peoples participating in biobanking and genomic research.
methodsA 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.
resultsSeventeen 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.
conclusionIndigenous 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.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.