Evidence map›Paper›PMID 32391301›Full record

ArticleFrontiers in public health2020

Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts.

Nadine Rena Caron, Meck Chongo, Maui Hudson, Laura Arbour, Wyeth W Wasserman, Stephen Robertson, Solenne Correard, Phillip Wilcox

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Frontiers in public health, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 46 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
46citing papers in PubMed, 1 pooled it
7.0field-weighted citation impact, top 3% of its field
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

46 citing papers in PubMed, 1 synthesis or guideline pooled it, 80 citations in OpenAlex.

  1. Pooled it
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  4. Considerations for biobanking of nonhuman genome data connected to Indigenous Peoples and lands.Conservation biology : the journal of the Society for Conservation Biology · 2026
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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

8 authors at 4 institutions in 2 countries.

Nadine Rena CaronDepartment of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Meck ChongoDepartment of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Maui HudsonFaculty of Māori and Indigenous Studies, University of Waikato, Hamilton, New Zealand.
Laura ArbourDepartment of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Wyeth W WassermanDepartment of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Stephen RobertsonDepartment of Mathematics & Statistics, University of Otago, Dunedin, New Zealand.
Solenne CorreardDepartment of Medical Genetics, University of British Columbia, Vancouver, BC, Canada.
Phillip WilcoxDepartment of Mathematics & Statistics, University of Otago, Dunedin, New Zealand.
University of British Columbia · CAUniversity of Otago · NZBC Cancer Agency · CAUniversity of Waikato · NZ

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

The potential to grow genomic knowledge and harness the subsequent clinical benefits has escalated the building of background variant databases (BVDs) for genetic diagnosis across the globe. Alongside the upsurge of this precision medicine, potential benefits have been highlighted for both rare genetic conditions and other diagnoses. However, with the ever-present "genomic divide," Indigenous peoples globally have valid concerns as they endure comparatively greater health disparities but stand to benefit the least from these novel scientific discoveries and progress in healthcare. The paucity of Indigenous healthcare providers and researchers in these fields contributes to this genomic divide both in access to, and availability of culturally safe, relevant and respectful healthcare using this genetic knowledge. The vital quest to provide equitable clinical research, and provision and use of genomic services and technologies provides a strong rationale for building BVDs for Indigenous peoples. Such tools would ground their representation and participation in accompanying genomic health research and benefit acquisition. We describe two, independent but highly similar initiatives-the "Silent Genomes" in Canada and the "Aotearoa Variome" in New Zealand-as exemplars that have had to address the aforementioned issues and work to create Indigenous BVDs with these populations. Taking into account the baseline inequities in genomic medicine for Indigenous populations and the ongoing challenges of implementing genomic research with Indigenous communities, we provide a rationale for multiple changes required that will assure communities represented in BVDs, as well as Indigenous researchers, that their participation will maximize benefits and minimize risk.

Indexed as

GenomicsPopulation GroupsCanadaHumansIndigenous PeoplesNew Zealanddatabasesgenomicsindigenousmaorivariantvariome

Identifiers

PMID32391301
PMCPMC7193324
OpenAlexW3018690985

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.