Evidence map›Paper›PMID 39843657›Full record

ReviewNature genetics2025

Overcoming challenges associated with broad sharing of human genomic data.

Jonathan E LoTempio, Jonathan D Moreno

Abstract readReview
In one paragraph

Review in Nature genetics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing 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

7 citing papers in PubMed.

  1. Article
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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

2 authors.

Jonathan E LoTempioDepartment of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA. lotempio@upenn.edu.ORCID 0000-0001-6897-5419
Jonathan D MorenoDepartment of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.

Funding

The Penn Postdoctoral Training Program in the Ethical, Legal and Social Implications of Genetics and GenomicsT32HG009496 · NHGRI · UNIVERSITY OF PENNSYLVANIA · PI Steven Joffe · 2017 to 2026
$3.4M
NHGRI NIH HHS T32 HG009496U.S. Department of Health & Human Services | NIH | National Human Genome Research Institute (NHGRI) T32HG009496
6 · The paper itself

Abstract

Since the Human Genome Project, the consensus position in genomics has been that data should be shared widely to achieve the greatest societal benefit. This position relies on imprecise definitions of the concept of 'broad data sharing'. Accordingly, the implementation of data sharing varies among landmark genomic studies. In this Perspective, we identify definitions of broad that have been used interchangeably, despite their distinct implications. We further offer a framework with clarified concepts for genomic data sharing and probe six examples in genomics that produced public data. Finally, we articulate three challenges. First, we explore the need to reinterpret the limits of general research use data. Second, we consider the governance of public data deposition from extant samples. Third, we ask whether, in light of changing concepts of broad, participants should be encouraged to share their status as participants publicly or not. Each of these challenges is followed with recommendations.

Indexed as

Genome, HumanGenomicsInformation DisseminationDatabases, GeneticHuman Genome ProjectHumans

Identifiers

PMID39843657
PMCPMC11849138

What OpenQuestion holds

Textmetadata
LicenceTDM
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.