ArticleJournal of genetic counseling2019
Indigenous Peoples and genomics: Starting a conversation.
Article in Journal of genetic counseling, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 2 of them syntheses 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
22 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- A Systematic Review Exploring Empirical Pharmacogenomics Research Within Global Indigenous Populations.Molecular genetics & genomic medicine · 2024Pooled it
- Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review.International journal of environmental research and public health · 2021Pooled it
- The relationship between uncertainty and trust in genomic medicine and research: A literature review and thematic analysis.European journal of human genetics : EJHG · 2026Review
- Cultural, ethical, legal, and social considerations in genomics research with Indigenous Peoples: A scoping review.European journal of human genetics : EJHG · 2026Article
- A content analysis of health-related epigenetic information in YouTube videos.Genetics in medicine : official journal of the American College of Medical Genetics · 2026Article
- Enhancing Equality, Equity, Diversity and Inclusion in Rare Disease Research in the United Kingdom.Nursing reports (Pavia, Italy) · 2025Article
- The Gut Microbiome and Epigenomic Reprogramming: Mechanisms, Interactions, and Implications for Human Health and Disease.International journal of molecular sciences · 2025Review
- The multigenerational impact of long QT syndrome: A Gitxsan perspective.Journal of genetic counseling · 2025Article
- Culturally safe and ethical biomarker and genomic research with Indigenous peoples-a scoping review.BMC global and public health · 2024Article
- Qualitative genomic research with Indigenous peoples: a scoping review of participatory practice.BMJ global health · 2024Article
- Native Hawaiian and Pacific Islander populations in genomic research.NPJ genomic medicine · 2024Review
- Aboriginal families living with MJD in remote Australia: questions of access and equity.International journal for equity in health · 2024Article
- Bridging Place-Based Astrobiology Education with Genomics, Including Descriptions of Three Novel Bacterial Species Isolated from Mars Analog Sites of Cultural Relevance.Astrobiology · 2023Article
- 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
- "This is my boy's health! Talk straight to me!" perspectives on accessible and culturally safe care among Aboriginal and Torres Strait Islander patients of clinical genetics services.International journal for equity in health · 2021Article
- The influence of social determinants of health on the genetic diagnostic odyssey: who remains undiagnosed, why, and to what effect?Pediatric research · 2021Review
- Uncovering social structures and informational prejudices to reduce inequity in delivery and uptake of new molecular technologies.Journal of medical ethics · 2020Article
- Genetic Counseling and Genome Sequencing in Pediatric Rare Disease.Cold Spring Harbor perspectives in medicine · 2020Review
- Barriers and Considerations for Diagnosing Rare Diseases in Indigenous Populations.Frontiers in pediatrics · 2020Review
- Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts.Frontiers in public health · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
7 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
Compared to European ancestral groups, Indigenous Canadians are more likely to have uninterpretable genome-wide sequencing results due to non-representation in reference databases. We began a conversation with Indigenous Canadians to raise awareness and give voice to this issue. We co-created a video explaining genomic non-representation that included diverse Indigenous view-points. We audio-recorded the focus groups including 30 First Nations, Métis, and Inuit individuals living in Greater Vancouver. After watching an introductory video explaining genomic testing, participants discussed issues surrounding collecting Indigenous genomic data, its control, and usage. Transcripts were analyzed, and participants' quotes representing main themes were incorporated into the introductory video. Indigenous participants discussed data interpretation and gave approval for quote usage. The 20 participants who provided feedback concurred with the thematic interpretation: Systemic racism interlaced most conversations, particularly within the theme of trust. Themes of governance emphasized privacy and fear of discrimination. Some participants thought a separate, Indigenous-controlled database was essential; others recognized advantages of international databases. The theme of implementation included creative ideas to collect Indigenous genomes, but prior approval from Indigenous leaders was emphasized. The final video (https://youtu.be/-wivIBDjoi8) was shared with participants to use as they wish to promote awareness and ongoing discussion of genomic diagnostic inequity.
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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.