Evidence map›Paper›PMID 40660395›Full record

ReviewHuman genomics2025

Communicating clearly about data sharing in genomics.

Donrich Thaldar, Diya Uberoi, Adrian Thorogood, Richard Milne, Ainsley J Newson, Alison Hall, David Glazer, Paul Esselaar, Yann Joly

Abstract readReview
PubMed Full text at PMC Publisher
In one paragraph

Review in Human genomics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. 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

9 authors.

Donrich ThaldarSchool of Law, University of KwaZulu-Natal, Durban, South Africa.
Diya UberoiCentre of Genomics and Policy, Institute of Genomics Medicine, McGill University, Montreal, QC, Canada. diya.uberoi@mcgill.ca.
Adrian ThorogoodTerry Fox Research Institute, Vancouver, BC, Canada.
Richard MilneWellcome Connecting Science, Wellcome Sanger Institute, Hinxton, UK.
Ainsley J NewsonSydney Health Ethics, Sydney School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, Australia.
Alison HallPHG Foundation, University of Cambridge, Cambridge, UK.
David GlazerVerily Life Sciences, South San Francisco, CA, USA.
Paul EsselaarSchool of Law, University of KwaZulu-Natal, Durban, South Africa.
Yann JolyCentre of Genomics and Policy, Institute of Genomics Medicine, McGill University, Montreal, QC, Canada.

Funding

DS-I Africa - LAWU01MH127690 · NIMH · UNIVERSITY OF KWAZULU-NATAL · PI THALDAR, DONRICH WILLEM · 2021 to 2023
$1.2M
Commonwealth of Australia, Medical Research Future Fund 2021 Genomics Health Futures Mission Grant, grant MRF2015531NIMH NIH HHS U01 MH127690US National Institute of Mental Health and the US National Institutes of Health U01MH127690
6 · The paper itself

Abstract

In the field of genomics, the secure and responsible sharing of data across institutions and borders is critical for advancing research and improving healthcare. However, challenges such as inconsistent terminology, data localization requirements, and cross-border data transfer regulations impede collaboration and innovation. To address these barriers, the Global Alliance for Genomics and Health (GA4GH), a global standards-setting organization in genomics, has developed a standardized lexicon of key terms for data sharing, including the nascent terms data visiting and federated data analysis. These definitions aim to improve communication within the genomics community by ensuring a consistent understanding of complex processes, addressing challenges like data localization and cross-border transfer. This article introduces these recently developed data sharing-related terms and considers their implications for data governance and global health research.

Indexed as

GenomicsInformation DisseminationHumansCross-border data transferData visitingGenomic data sharing

Identifiers

PMID40660395
PMCPMC12257658

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.