Biosamples

Physical biological material, postmortem brain tissue, biospecimens, cerebrospinal fluid, and cell lines, is the substrate much neuroscience data is derived from. Unlike that derived data, it cannot be copied, so its sharing depends on physical biobanks, material transfer agreements, and sample-level catalogues rather than file repositories. Cell lines, populations of cells kept alive in culture, include patient-derived stem cell lines (iPSCs) that can be grown into neurons or brain organoids, a renewable source of human neural material a fixed tissue sample cannot provide. This perspective covers the infrastructure that makes biological material findable and accessible for research, and how it connects to the data generated from it.

Why biosamples are governed differently

A sequencing read or an MRI volume can be copied without limit, so sharing it is a matter of repositories and access control. A brain tissue block is finite, so sharing it is a matter of physical custody, donor consent, and the agreements that govern who receives material and for what use. Biobanks sit between donors and researchers as the governance layer, holding material under ethical oversight and releasing it under a material transfer agreement rather than a download licence. Data derived from a sample follows the access framework of its own modality. The sample itself is governed separately, by biobank policy.

Governance and standards

BBMRI-ERIC is the European research infrastructure for biobanking, connecting national biobank networks to enable standardised sample and data sharing. Its MIABIS standard (Minimum Information About BIobank data Sharing) describes biobanks, collections, and study designs in a common form, and its Directory is a federated catalogue for finding collections that match inclusion criteria. The BBMRI-ERIC Negotiator is the access-request platform connecting researchers with biobank access committees, using GA4GH DUO to encode consent terms.

Clinical and phenotypic data associated with samples use the same standards as the Health and Genomics perspectives: OMOP CDM for phenotypic data, HL7 FHIR for clinical exchange, and Phenopackets for structured genotype-phenotype descriptions.

Biobanks and tissue repositories

The Netherlands Brain Bank is a long-running postmortem tissue resource, collecting brain material from donors with and without neurological and psychiatric disorders and distributing it with anonymised medical records and neuropathological diagnoses. Its programmes pair tissue with derived data, including a dedicated post-mortem MRI programme for multiple sclerosis and a neurogenomics database of transcriptome and genomics data from its tissue.

GTEx is a postmortem tissue bank spanning 54 tissue sites from 948 donors as of its 2020 release, including around a dozen distinct brain regions per donor. Processed gene expression data is openly available, while the physical biospecimens are requested from the Broad Institute.

C-BIG (Clinical Biospecimen Imaging and Genetic Repository) at the Montreal Neurological Institute integrates biospecimen, clinical, neuroimaging, and genomic data from neurological-disease patients and controls into a single open platform, a biobank whose physical collection and derived-data repository are operated together.

CIMBI combines a Copenhagen brain-imaging database with a biobank of blood and saliva samples from healthy volunteers and patients, run jointly with NRU Copenhagen for research on the serotonergic system.

Institut de Myologie holds the Myobank-AFM tissue bank for neuromuscular disease, alongside imaging and genetic phenotyping infrastructure. The Paris Brain Institute operates a DNA and cell bank among its research platforms.

Population biobanks extend the same model to whole cohorts. UK Biobank banks blood and other samples from 500,000 participants alongside genomics, imaging, and linked health records. Lifelines is a three-generation population biobank collecting blood, plasma, and other material with longitudinal health and cognitive data. All of Us Research Program collects blood and saliva samples alongside whole genome sequencing and linked electronic health records. AIBL collects blood and other biospecimens alongside its neuroimaging and biomarker data for Alzheimer’s disease research. NTR runs a dedicated twin biobank, collecting DNA and other biomaterial from participants across its national twin-family registry. FTC (Finnish Twin Cohort) is a comparable twin biobank whose samples were transferred to Finland’s THL Biobank and combined into FinnGen.

Derived-data archives

Some resources hold the data derived from tissue rather than the tissue itself. Synapse AMP-AD hosts multiomics data generated from postmortem brain cohorts, where the biospecimens remain at the contributing brain banks and the portal distributes the derived molecular data. A researcher seeking material works through the biobank and a material transfer agreement. A researcher seeking the existing molecular data works through the data portal under its access terms.

For genomic data generated from these samples and its repositories and governance, see Genomics. For regulatory constraints on health data linked to biobank participants, see Health. For phenotyping standards used to describe sample donors in rare-disease research, see Rare Disease and Phenotyping.