A biobank is a biorepository that stores biospecimens that are useful for research purposes. They can also be known as tissue banks or bioresources. The biobanks have become a crucial resource for medical research since the late 1990s as they support various researches such as those in the field of personalized medicine and genomics. Biobanks allow researchers to access data that represents a large number of people. The biospecimens and data acquired can be used by multiple researchers for cross purpose research studies. This is vital as many researchers face difficulties in acquiring sufficient tissue samples before the existence of biobanks. Some biobanks store and collect samples from a specific population or from those with certain diseases. Biobanks can be found in places such as universities, hospitals, pharmaceutical companies, charities, and more. they are also required to follow the local legislation and provisions.
A Brief History
Before the existence of biobanks, scientists collected all the biospecimens required for their experiments. However, they came to realize that while genetics may contribute to many diseases, very few diseases can be attributed to a single defective gene. This means that most diseases are due to multiple genetic factors. This led them to start collecting more genetic information whenever they could. At the same time, the advancement of technology also enabled the wide sharing of information. This led to the conclusion where access to data collected for any genetics work could be helpful in other genetic research. Scientists then started to store genetic data in single places to allow community sharing. As a result, many single nucleotide polymorphisms were discovered. While the new practice allowed the collection and sharing of genotype data, there was no system in place that gathers the related phenotype data. Genotype data can be obtained from biospecimens while phenotype data is obtained from interviewing, examination, and assessment of the donor. In cases where phenotype data were available, there were ethical issues about the extent of sharing this information. The biobank was then developed to store both genotypic and phenotypic data, allowing access to researchers who may need it. In the United States, researchers store about 270 million specimens in 2008 with an average new sample collection rate of 20 million specimens annually. However, there are some issues regarding the ethical, social, and legal issues of biobanks which are constantly debated and improved.
Types of Biobanks
Biobanks usually collect human biospecimens. However, there are also biobanks who have a collection of animals, plants, and other nonhuman specimens. Cryogenic storage facilities are usually available for storage of biospecimens. These facilities can range from individual refrigerators to warehouses that are maintained by universities, nonprofit organizations, hospitals, and pharmaceutical companies. Biobanks can be categorized based on design or purpose. Biobanks that are disease-oriented are generally affiliated with a hospital where samples are collected to represent a variety of diseases. Biobanks that are population-based does not usually have an affiliation with a hospital as they obtain samples from large groups of different individuals. Tissue banks function to harvest and store tissues for research and transplantation. Virtual biobanks integrate their epidemiological cohorts into the general population and allow biospecimens to meet local regulations. Population banks store biomaterial, environmental data, lifestyle information, and clinical data.
Biospecimen types that are available include organ tissue, blood, saliva, urine, skin cells, and other tissues or fluids taken from the body. The specimens are kept in the appropriate condition until a researcher requires it for an experiment, test, or analysis. The commonest test performed is a genome-wide association study.
The samples are maintained to prevent deterioration and protected from both accidental and intentional damage. The sample is registered in the computer-based system. The physical location of the specific sample is also noted to enable the specimen to be easily located when required. Samples are de-identified to ensure donor privacy and allow blinding of researchers to the analysis. Room temperature storage may be used in some cases as it helps with cost efficiency and to avoid issues such as freezer failure.
Some ethical issues regarding biobanking are the ownership of samples, ownership of derived data, right to privacy for donors, the extent of donor consent, and the extent to which the donor can share regarding the return of research results.
Ethical oversight from an independent reviewer is required to ensure that all parties are protected. In medical research, this is often done by the institutional review board which functions to enforce the standards that are set by the local government. While different countries may have different laws, the regulations used are often modeled based on internationally proposed biobank governance recommendations. Most biobanks adapt to the broad guidelines that are internationally accepted. Examples of organizations that have helped in creating the biobanking guidelines include:
Council for International Organizations of Medical Sciences
World Medical Association
World Health Organization
Human Genome Organization
United Nations Educational, Scientific, and Cultural Organization
Biobank. Wikipedia. Accessed 2/21/2019. https://en.wikipedia.org/wiki/Biobank
Biobank Introduction. UK Clinical Research Collaboration: Tissue Directory and Coordination Centre. Accessed 2/21/2019. https://www.biobankinguk.org/introduction/
Basics. EGAN Patients Network for Medical Research and Health. Accessed 2/21/2019. https://egan.eu/biomedical-research/medical-data-and-biobanks/basics/