Article 51 (q)

Health data from biobanks and associated databases.

Definition
Biobank data refers to health data and associated data stored in biobanks. Biobank refers to a unit maintained by a biobank operator engaging in biobanking activities for the purposes of collecting and storing human biological samples and information associated with the samples for future research. Different biobank collect different types of samples and information depending on the specific purpose of the biobank. Biobank data collection can be population-based or disease-specific: while some biobanks collect samples and contain data from people in a specific population or region, others are specific to a particular disease, such as cancer. Biobanks collect samples and donor related health data from consented sample donors typically, typically during regular laboratory and hospital visits or for specific research cohort collections.
Examples
  • General information on the samples stored in a biobank to be used for research purposes.

  • Data obtained through analysis, analysing the samples stored in a biobank, or other information associated with the samples and obtained through other means.

  • Data necessary for biobank research on the person from whom the sample was taken.

  • Genomic data and epigenomic data such as like DNA/RNA and EXO sequences, genotypes, gene expression levels, epigenotypes, data from methylation scans, histone modification, etc.

  • Proteomics and metabolomics data such as protein expression levels in cells or metabolites and their concentration in cells.

  • Social demographic data such as age and gender, place of residence.

  • Clinical data and longitudinal health data from service and follow-ups such as diagnosis, treatments, laboratory results, etc.

  • Lifestyle data, that is, data of diet, smoking, alcohol consumption, physical activity, etc.

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