Biobank

A biobank is a type of biorepository that stores biological samples (usually human) for use in research. Since the late 1990s biobanks have become an important resource in medical research, supporting many types of contemporary research like genomics and personalized medicine. A biobank is a type of biorepository that stores biological samples (usually human) for use in research. Since the late 1990s biobanks have become an important resource in medical research, supporting many types of contemporary research like genomics and personalized medicine. Biobanks give researchers access to data representing a large number of people. Samples in biobanks and the data derived from those samples can often be used by multiple researchers for cross purpose research studies. For example, many diseases are associated with single-nucleotide polymorphisms, and performing genome-wide association studies using large collections of samples which represent tens or hundreds of thousands of individuals can help to identify disease biomarkers. Many researchers struggled to acquire sufficient samples prior to the advent of biobanks. Biobanks have provoked questions on privacy, research ethics and medical ethics. While viewpoints on what constitutes appropriate biobank ethics diverge, consensus has been reached that operating biobanks without establishing carefully considered governing principles and policies could be detrimental to communities that participate in biobank programs. Prior to the late 1990s, scientists collected the biological specimens desired for their experiments themselves, and did not have a particular goal of routinely sharing their specimens with other laboratories. When researching genetic disorders, scientists would only consider genes they already expected to be associated with that disorder—only looking for mutations in BRCA 1 or BRCA 2 for breast cancer, for example. By the late 1990s scientists realized that although many diseases are caused at least in part by a genetic component, few diseases originate from a single defective gene; most genetic diseases are caused by multiple genetic factors on multiple genes. Because the strategy of looking only at single genes was ineffective for finding the genetic components of many diseases, and because new technology made the cost of examining a single gene versus doing a genome-wide scan about the same, scientists began collecting much larger amounts of genetic information when any was to be collected at all. At the same time technological advances also made it possible for wide sharing of information, so when data was collected, many scientists doing genetics work found that access to data from genome-wide scans collected for any one reason would actually be useful in many other types of genetic research. Whereas before data usually stayed in one laboratory, now scientists began to store large amounts of genetic data in single places for community use and sharing. An immediate result of doing genome-wide scans and sharing data was the discovery of many single-nucleotide polymorphisms, with an early success being an improvement from the identification of about 10,000 of these with single-gene scanning and before biobanks versus 500,000 by 2007 after the genome-wide scanning practice had been in place for some years. A problem remained; this changing practice allowed the collection of genotype data, but it did not simultaneously come with a system to gather the related phenotype data. Whereas genotype data comes from a biological specimen like a blood sample, phenotype data has to come from examining a specimen donor with an interview, physical assessment, review of medical history, or some other process which could be difficult to arrange. Even when this data was available, there were ethical uncertainties about the extent to which and the ways in which patient rights could be preserved by connecting it to genotypic data. The institution of the biobank began to be developed to store genotypic data, associate it with phenotypic data, and make it more widely available to researchers who needed it. In 2008 United States researchers stored 270 million specimens in biobanks, and the rate of new sample collection was 20 million per year. These numbers are large and representative of a fundamental worldwide change in the nature of research between the time when such numbers of samples could not be used and the time when researchers began demanding them. Collectively, researchers began to progress beyond single-center research centers to a next-generation qualitatively different research infrastructure. Some of the challenges raised by the advent of biobanks are ethical, legal, and social issues pertaining to their existence, including the fairness of collecting donations from vulnerable populations, providing informed consent to donors, the logistics of data disclosure to participants, the right to ownership of intellectual property, and the privacy and security of donors who participate. Because of these new problems, researchers and policymakers began to require new systems of research governance. Many researchers have identified biobanking as a key area for infrastructure development in order to promote drug discovery and drug development. The term 'biobank' has been used in different ways but one way is to define it as 'an organized collection of human biological material and associated information stored for one or more research purposes'. Collections of plant, animal, microbe, and other nonhuman materials may also be described as biobanks but in some discussions the term is reserved for human specimens.