Evidence map›Paper›PMID 39707953›Full record

ArticleThe Hastings Center report2024

Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape.

Stephanie A Kraft, Kathleen F Mittendorf

Abstract read
In one paragraph

Article in The Hastings Center report, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 4 papers.

0numbers the graph read from it
0cells of the map it votes in
4citing 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

4 citing papers in PubMed.

  1. Participant Perspectives on Data Sharing in Clinical Craniofacial Research: Qualitative Interviews With Participants With Craniofacial Microsomia and Their Caregivers.The Cleft palate-craniofacial journal : official publication of the American Cleft Palate-Craniofacial Association · 2026
    Article
  2. Navigating data sharing in research.American journal of human genetics · 2026
    Review
  3. Article
  4. 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

2 authors.

Stephanie A Kraft
Kathleen F Mittendorf

Funding

Respect for Persons in the Genomics Research Enrollment Process: Incorporating Diverse Experiences and AttitudesK01HG010361 · NHGRI · SEATTLE CHILDREN'S HOSPITAL · PI KRAFT, STEPHANIE A · 2019 to 2023
$691k
National Institutes of Health, under National Human Genome Research Institute K01HG0010361NHGRI NIH HHS K01 HG010361
6 · The paper itself

Abstract

Scientific data-sharing and open science initiatives are increasingly important mechanisms for advancing the impact of genomic research. These mechanisms are being implemented as growing attention is paid to the need to improve the inclusion of research participants from marginalized and underrepresented groups. Together, these efforts aim to promote equitable advancements in genomic medicine. However, if not guided by community-informed protections, these efforts may harm the very participants and communities they aim to benefit. This essay examines potential benefits and harms of open science and explores how to advance a more just vision of open science in genomics. Drawing on relational ethics frameworks, we argue that researchers should consider their obligations to participants as well as the broader communities that are impacted by their research. We propose eight strategies to provide a foundation of practical steps for researchers to reduce the possibility of harms stemming from open science and to work toward genomic justice.

Indexed as

GenomicsInformation DisseminationSocial JusticeGenetic ResearchHumansdata sharinggenomicshealth equityopen sciencerelational ethicsresearch ethics

Identifiers

PMID39707953
PMCPMC12320189

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.