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

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.