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Peer-reviewedCC BYJAMIA open

Researchers' perspectives on donor-level metadata collection and reporting for human tissue research.

  • Rachel Liu-Galvin1
  • Kathy Tran2
  • Mishal Khan1
  • Michael T Eadon3
  • Pinaki Sarder4
  • Yulia A Levites Strekalova1
4 affiliations
  1. 1Department of Health Services Research, Management and Policy, College of Public Health and Health Professions, University of Florida, Gainesville, FL 32610, United States.
  2. 2Department of Economics, College of Liberal Arts and Sciences, University of Florida, Gainesville, FL 32610, United States.
  3. 3Divisions of Nephrology and Clinical Pharmacology, Indiana University School of Medicine, IN 46202, United States.
  4. 4Department of Medicine (Quantitative Health), College of Medicine, University of Florida, Gainesville, FL 32610, United States.
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Abstract

No widely adopted guidelines exist for collecting and reporting donor-level metadata in tissue-based research, which limits interpretability and reproducibility and may introduce bias. This study aimed to identify researchers' perspectives to inform ethical and appropriate metadata practices. Semi-structured interviews were conducted with 16 investigators from the Human BioMolecular Atlas Program. Thematic analysis using inductively derived codes identified metadata elements and perspectives on their collection and reporting. Participants identified 80 metadata variables across six domains: demographic, sociodemographic, medical history, personally identifying information, cause of death, and tissue/organ data. Participants predominantly supported collection and reporting of demographics and medical history, whereas views on cause of death and sociodemographic data were mixed. These findings can inform the future development of ethical guidelines for donor-level metadata collection and reporting in tissue-based research. Future stakeholder engagement and consensus-building are needed to determine how individual metadata elements should be defined, collected, operationalized, and reported.

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Cite

BibTeXRIS
BibTeX
@article{liugalvin2026researchers,
  title = {{Researchers' perspectives on donor-level metadata collection and reporting for human tissue research.}},
  author = {Rachel Liu-Galvin and Kathy Tran and Mishal Khan and Michael T Eadon and Pinaki Sarder and Yulia A Levites Strekalova},
  journal = {JAMIA open},
  year = {2026},
  month = nov,
  doi = {10.1093/jamiaopen/ooag213},
  url = {https://europepmc.org/article/MED/42999363},
  note = {CC BY},
}
RIS
TY  - JOUR
TI  - Researchers' perspectives on donor-level metadata collection and reporting for human tissue research.
AU  - Rachel Liu-Galvin
AU  - Kathy Tran
AU  - Mishal Khan
AU  - Michael T Eadon
AU  - Pinaki Sarder
AU  - Yulia A Levites Strekalova
PY  - 2026
DA  - 2026/11/06
JO  - JAMIA open
DO  - 10.1093/jamiaopen/ooag213
UR  - https://europepmc.org/article/MED/42999363
AB  - No widely adopted guidelines exist for collecting and reporting donor-level metadata in tissue-based research, which limits interpretability and reproducibility and may introduce bias. This study aimed to identify researchers' perspectives to inform ethical and appropriate metadata practices. Semi-structured interviews were conducted with 16 investigators from the Human BioMolecular Atlas Program. Thematic analysis using inductively derived codes identified metadata elements and perspectives on their collection and reporting. Participants identified 80 metadata variables across six domains: demographic, sociodemographic, medical history, personally identifying information, cause of death, and tissue/organ data. Participants predominantly supported collection and reporting of demographics and medical history, whereas views on cause of death and sociodemographic data were mixed. These findings can inform the future development of ethical guidelines for donor-level metadata collection and reporting in tissue-based research. Future stakeholder engagement and consensus-building are needed to determine how individual metadata elements should be defined, collected, operationalized, and reported.
SN  - 2574-2531
ER  -