Researchers’ perspectives on donor-level metadata collection and reporting for human tissue research
Year: 2026
Type: article
Abstract: Introduction: 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. Materials and Methods: 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. Results: 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. Conclusion: 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.
Source: JAMIA Open
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: gold
Estimated APC paid: $3,762
OpenAlex ID: W7171383806