Toward Standards for Donor-Level Metadata Reporting in Human Tissue Research: Perspectives from Tissue Researchers
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Introduction
No widely adopted guidelines exist for collecting and reporting donor-level metadata in tissue-based research, limiting interpretability, reproducibility, and potentially introducing bias. This study aimed to inform ethical and appropriate metadata practices.
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. Most supported routine collection and reporting of demographics and medical history, whereas views on cause of death and sociodemographic data were mixed.
Conclusion
We recommend routinely collecting and reporting demographics and medical history, while restricting cause of death and sociodemographic variables to situations with explicit consent or justification. These findings provide initial evidence to inform ethical donor metadata guidelines, with further stakeholder engagement and consensus-building needed.
