Evidence map›Paper›PMID 41807734›Full record

ArticleEuropean journal of human genetics : EJHG2026

Cultural, ethical, legal, and social considerations in genomics research with Indigenous Peoples: A scoping review.

Rubi-Jayne Cohen, Rebekah McWhirter, Lyndsay Newett, Emily Colonna, Azure Hermes, Alex Brown

Abstract readScoping Review
In one paragraph

Article in European journal of human genetics : EJHG, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 3 papers.

0numbers the graph read from it
0cells of the map it votes in
3citing papers in PubMed
–field-weighted citation impact
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

3 citing papers in PubMed.

  1. Best practices for using biological data in psychological research.Journal of mood and anxiety disorders · 2026
    Review
  2. Expanding the genomic world: from disease to society.European journal of human genetics : EJHG · 2026
    Article
  3. Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Rubi-Jayne CohenNational Centre for Indigenous Genomics, College of Science & Medicine, The Australian National University, Canberra, ACT, Australia. rubi.cohen@anu.edu.au.ORCID 0000-0001-7146-9656
Rebekah McWhirterNational Centre for Indigenous Genomics, College of Science & Medicine, The Australian National University, Canberra, ACT, Australia.
Lyndsay NewettNational Centre for Indigenous Genomics, College of Science & Medicine, The Australian National University, Canberra, ACT, Australia.ORCID 0000-0002-1664-3620
Emily ColonnaYardhura Walani, National Centre for Epidemiology and Population Health, The Australian National University, Canberra, ACT, Australia.
Azure HermesNational Centre for Indigenous Genomics, College of Science & Medicine, The Australian National University, Canberra, ACT, Australia.
Alex BrownNational Centre for Indigenous Genomics, College of Science & Medicine, The Australian National University, Canberra, ACT, Australia.ORCID 0000-0003-2112-3918

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Indigenous communities are under-represented in genomics research, contributing to inequitable health-related knowledge, outcomes, and benefits. Under-representation reflects enduring consequences of colonial research practices that have engendered cultural, ethical, legal, and social (CELS) concerns among communities. Researchers must understand, navigate, and address these in their research practices. This study aimed to identify and synthesise CELS considerations to inform Indigenous genomics research practices. A systematic scoping review was conducted, including peer-reviewed papers on genomics that discussed cultural, ethical, legal, or social matters relevant to Indigenous Peoples globally; available in full-text and in English. Inductive content analysis using NVivo 12 Plus was undertaken to identify CELS considerations and develop content categories, with papers coded to multiple categories where relevant. As of May 2024, 186 papers were identified for inclusion: n = 70 (38%) included cultural, n = 91 (49%) ethical, n = 49 (26%) legal, and n = 125 (67%) social considerations. Cultural considerations included cultural harm, significance of blood, and the need to integrate Indigenous knowledges. Ethical considerations included consent, data access and sharing, privacy, and confidentiality. Legal considerations included laws protecting Indigenous interests, control of genomic samples and data, biovalue and DNA as a commodity, genetic discrimination, and the use of genomic data in constructing and defining racial identity. Social considerations included collective decision-making, genetic determinism, and stigmatisation, and the importance of contextualising findings within wider social determinants of health frameworks. Overall, researchers need to understand, navigate, and address CELS considerations of relevance to Indigenous Peoples to build trust, promote inclusion, and support equitable benefit-sharing in genomics research.

Indexed as

Genetic ResearchGenomicsIndigenous PeoplesHumans

Identifiers

PMID41807734
PMCPMC13247151

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.