Exploring the World’s Largest Biobanks
Posted 5th October 2018 by Kate Barlow
There are currently more than 120 biobanks worldwide. While most focus on genomic research and personalised medicine, biobanks range in size. Small operations have just a few freezers which are kept in a researcher’s laboratory, a clinical laboratory, or a pathology suite, while the larger, commercial ones support large clinical and epidemiological suites. In addition, the storage of samples tends to vary:
- National biobanks are centralised and accept samples from multiple locations
- Federated models look after their own collections, but list them on a central, shared database
- Project-driven specimens are collected and distributed to provide answers to a wide range of research questions
- ‘General’ storage systems consist of reference collections.
In Ireland, approximately 40% of the population has contributed DNA, which is stored in biobanks that are, largely, privately owned.  Ethics, patient confidentiality and securing fixed-income streams are a priority in the ‘evolving landscape of biopreservation and biobanking’ in Ireland. 
Biobanks in the US operate in a similar way. However, US citizens have become suspicious of the way that their data is stored and treated, as demonstrated by the way in which 23andMe was accused of selling its customers’ genetic data for profit in 2015. UK biobanks can only store samples if they follow the required legislation – the Human Tissue Act (2004), which regulates the way that organisations remove, store, and use human tissue. Similarly, the Estonian Human Genes Research Act, passed in 1999, governs the activities of biobanking projects and ensures patient anonymity and gives the donor full control over the way that their data is handled. 
To fully explore the different ways in which they are organised, we’re going to take a closer look at some of the largest biobanks in the world.
In 2003, the Ministry of Education, Culture, Sports, Science, and Technology (MEXT) established the BioBank Japan Project; a large, repository of human biospecimens, such as DNA and serum, as well as relevant medical information. It has a registry of patients diagnosed with any of 47 common diseases. The goal of the project is to enable the practical implementation of individually optimised medical treatment (eg. tailor-made medicine).
Currently, the BioBank Japan Project has the genetic information of genome-wide genotyping data in 200,000 patients.
Established in 2007, UK Biobank is a national and international health resource, aiming to improve the prevention, diagnosis, and treatment of a wide range of serious and life-threatening illnesses. This includes:
- Heart diseases
- Eye disorders
- And forms of dementia
It’s a general collection with a centralised storage system, which is used to store blood and urine samples.
UK Biobank is supported by the NHS and has previously received funding from the Welsh government, British Heart Foundation, Cancer Research UK, and Diabetes UK. It’s a non-profit project which received initial funding of about £62 million. 
The first operating network of biobanks in Europe, providing tissue, DNA, and cell samples to contribute towards research in rare diseases. More than 150,000 biological samples are available across the network and because it has a federated storage system, the EuroBioBank has agreed to list them on a shared database. Samples can be requested via the RD-Connect Sample Catalogue. 
It was originally funded by the European Commission between 2003 and 2006. In 2017, the EuroBioBank is composed of 25 rare disease biobank members from 9 European countries, including Germany Hungary, Italy, Malta, Slovenia, Spain, the UK, and Turkey, as well as Israel and Canada. 
Following the Chernobyl disaster in 1986, large numbers of thyroid tumours occurred in areas that were exposed to high levels of fallout. It is estimated that in Belarus alone, there have been nearly 5000 cases of thyroid cancer among children aged up to eighteen years-old. 
The CTB is a general collection that stores tissue, blood, DNA, RNA, and tissue microarray samples in a federated storage system. It is the first international cooperation that seeks to establish a collection of biological samples from tumours and normal tissues from patients for whom the aetiology of their disease is known – exposure to radioiodine in childhood.
The project aims to collect specimens of thyroid cancer operated on or after 1 October 1998 and ensure that they are properly described and sampled. Diagnoses are agreed by renowned pathologists. Diagnoses are also made available to research groups and the overarching aim is to build an archive of data.
The tissue banks are situated in two of the countries that were most exposed to fallout from the disaster. One can be found at the Institute of Endocrinology and Metabolism in Kiev, Ukraine and the other at the Ministry of Health of the Russian Federation, A. Tsyb Medical Radiological Research Centre in Obninsk.
The Victorian Cancer Biobank is a consortium of tissue banks with member sites at Austin Health, Melbourne Health, Peter MacCallum Cancer Centre, and Southern Health. The consortium collects and distributes samples to support cancer research worldwide and since it was established in 2006, more than 19,000 citizens of Victoria have donated blood and surplus tissue. In addition, 135 cancer research groups in Australia and beyond have applied for samples.
It is one of the largest consortium of biobanks in the world and accepts samples from tissue, RNA, DNA, tissue microarray, and blood donors across 27 public and private hospitals. 
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