Evidence map›Paper›PMID 41127255›Full record

ArticleJAMIA open2025

Ethical sourcing in the context of health data supply chain management: a value sensitive design approach.

Camille Nebeker, Jean Christophe Bélisle-Pipon, Benjamin X Collins, Ashley Cordes, Kadija Ferryman, Brian J McInnis, Shannon K McWeeney, Laurie L Novak, Susannah Rose, Joseph M Yracheta and 5 more

Abstract read
In one paragraph

Article in JAMIA open, 2025. 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. Navigating data sharing in research.American journal of human genetics · 2026
    Review
  2. Article
  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

15 authors.

Camille NebekerHerbert Wertheim School of Public Health and Human Longevity Science, University of California San Diego, La Jolla, CA 92093, United States.
Jean Christophe Bélisle-PiponFaculty of Health Sciences, Simon Fraser University, Burnaby, BC V5A 1S6, Canada.
Benjamin X CollinsDepartment of Medicine, Vanderbilt University Medical Center, Nashville, TN 37232, United States.ORCID https://orcid.org/0000-0002-6884-3819
Ashley CordesIndigenous Media Studies in ENVS and Data Science, University of Oregon, Eugene, OR 97403, United States.
Kadija FerrymanBerman Institute of Bioethics, Johns Hopkins University, Baltimore, MD 21205, United States.
Brian J McInnisSchool of Information, University of Texas at Austin, Austin, TX 78712, United States.
Shannon K McWeeneyKnight Cancer Institute, Oregon Health and Sciences University, Portland, OR 97239, United States.
Laurie L NovakDepartment of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37203, United States.ORCID https://orcid.org/0000-0002-0415-4301
Susannah RoseDepartment of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37203, United States.ORCID https://orcid.org/0000-0001-5895-7460
Joseph M YrachetaHomelands of the Oceti Sakowin (Sioux), Native Bio Data Consortium, Eagle Butte, SD 57625, United States.
Ishan C WilliamsSchool of Nursing, University of Virginia, Charlottesville, VA 22903, United States.ORCID https://orcid.org/0000-0002-8329-9225
Xiaoqian JiangMcWilliams School of Biomedical Informatics, University of Texas Health Houston, Houston, TX 77030, United States.ORCID https://orcid.org/0000-0001-9933-2205
Ellen W ClaytonCenter for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, TN 37203, United States.
Bradley A MalinDepartment of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37203, United States.
Bridge2AI Ethical, Legal And Social Implications AI Working Group

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

Objective: The Bridge2AI program is establishing rules of practice for creating ethically sourced health data repositories to support the effective use of ML/AI in biomedical and behavioral research. Given the initially undefined nature of ethically sourced data, this work concurrently developed definitions and guidelines alongside repository creation, grounded in a practical, operational framework. Materials and Methods: A Value Sensitive Design (VSD) approach was used to explore ethical tensions across stages of health data repository development. The conceptual investigation drew from supply chain management (SCM) processes to (1) identify actors who would interact with or be affected by the data repository use and outcomes; (2) determine what values to consider (ie, traceability accountability, security); and (3) analyze and document value trade-offs (ie, balancing risks of harm to improvements in healthcare). This SCM framework provides operational guidance for managing complex, multi-source data flows with embedded bias mitigation strategies. Results: This conceptual investigation identified the actors, values, and tensions that influence ethical sourcing when creating a health data repository. The SCM steps provide a scaffolding to support ethical sourcing across the pre-model stages of health data repository development. Ethical sourcing includes documenting data provenance, articulating expectations for experts, and practices for ensuring data privacy, equity, and public benefit. Challenges include risks of ethics washing and highlight the need for transparent, value-driven practices. Discussion: Integrating VSD with SCM frameworks enables operationalization of ethical values, improving data integrity, mitigating biases, and enhancing trust. This approach highlights how foundational decisions influence repository quality and AI/ML system usability, addressing provenance, traceability, redundancy, and risk management central to ethical data sourcing. Conclusion: To create authentic, impactful health data repositories that serve public health goals, organizations must prioritize transparency, accountability, and operational frameworks like SCM that comprehensively address the complexities and risks inherent in data stewardship.

Indexed as

artificial intelligenceethically sourcedhealth data repositorymachine learningresearch ethics

Identifiers

PMID41127255
PMCPMC12539179

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.