Evidence map›Paper›PMID 40270042›Full record

ArticleArchives of public health = Archives belges de sante publique2025

From concept to approval: human genomic data integration with population observational data - insights from a Belgian pilot study.

Nina Van Goethem, Johan Van der Heyden, Pierre Smith, Wannes Van Hoof, Harlinde De Schutter, Melissa Van Bossuyt, Karin De Ridder, Marc Van Den Bulcke, Emilie Cauët

Abstract readLetter
In one paragraph

Article in Archives of public health = Archives belges de sante publique, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing 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

1 citing paper in PubMed.

  1. Article
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.

Nina Van GoethemScientific Directorate of Epidemiology and public health, Sciensano, J. Wytsmanstraat 14, Brussels, 1050, Belgium. Nina.VanGoethem@sciensano.be.ORCID http://orcid.org/0000-0001-7316-6990
Johan Van der HeydenScientific Directorate of Epidemiology and public health, Sciensano, J. Wytsmanstraat 14, Brussels, 1050, Belgium.
Pierre SmithScientific Directorate of Epidemiology and public health, Sciensano, J. Wytsmanstraat 14, Brussels, 1050, Belgium.ORCID http://orcid.org/0000-0003-3178-9924
Wannes Van HoofScientific Directorate of Epidemiology and public health, Sciensano, J. Wytsmanstraat 14, Brussels, 1050, Belgium.
Harlinde De SchutterBelgian Cancer Registry, Brussels, Belgium.
Melissa Van BossuytData Protection and Information Security, Sciensano, J. Wytsmanstraat 14, Brussels, 1050, Belgium.
Karin De RidderScientific Directorate of Epidemiology and public health, Sciensano, J. Wytsmanstraat 14, Brussels, 1050, Belgium.
Marc Van Den BulckeScientific Directorate of Epidemiology and public health, Sciensano, J. Wytsmanstraat 14, Brussels, 1050, Belgium.
Emilie CauëtScientific Directorate of Epidemiology and public health, Sciensano, J. Wytsmanstraat 14, Brussels, 1050, Belgium.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Linking genomic data with population-level observational data sources offers a powerful approach to advance public health genomics research, providing a more comprehensive view of health outcomes by incorporating information on various health determinants. However, integrating data from scattered sources poses significant challenges. Genomic data, with its unique identifying properties and ethical concerns, is particularly sensitive and requires strict security measures and transparent participant communication to ensure confidentiality and maintain public trust. In Belgium, a pilot study has been set up to evaluate genetic and non-genetic health determinants associated with cancer. As a crucial step towards this scientific objective, the study also aims to assess the feasibility and complexity of linking genomics data with national population-based datasets. The process, ranging from conceptualisation and data discovery to securing approvals and finalising agreements, took two years. Each phase of this process offers opportunities to improve efficiency, enhance coordination between stakeholders, and address legal and ethical challenges. Establishing comprehensive, interoperable data catalogues can facilitate data discovery, while standardising data access requests can simplify processes. Pre-established partnerships or agreements can reduce administrative burdens and consequently, improve the timeliness of the research. Additionally, planning for sustainability in advance and rethinking consent procedures could reduce ad hoc approval procedures and support structural solutions for secondary use and linkage of health data in the public interest. This paper highlights practical challenges and considerations relevant to data linkage studies in general, offering insights for researchers conducting integrated public health genomics research.

Indexed as

Data linkagesHuman genomic dataPopulation observational dataPrecision public healthPublic health genomicsReal-world dataWhole-genome sequencing

Identifiers

PMID40270042
PMCPMC12020153

What OpenQuestion holds

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LicenceCC BY
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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.