Difference between revisions of "Biobanking"

Revision as of 17:37, 26 April 2016

Biobanking is a form of biological storage, used in research settings. From the 1990s onwards, biobanks have become instrumental in medical research, particularly in the fields of genomics and personalized medicine.

Biobanks allow researchers to collect and analyze vast quantities of data. The samples and data collected by biobanks are often used by researchers in multiple projects and settings, most significantly cross-purpose studies, often for the purposes of fighting and understanding diseases and how they are spread. Prior to the advent of biobanks, acquiring samples for these purposes was much harder than it is now.

Ethically, biobanks have raised questions on privacy, research ethics, and medical ethics. While viewpoints on these ethics are varied, the general consensus is that strong ethical guidelines and policies are needed for the purposes of operating a biobank, as failing to do so can be detrimental to biobanks themselves, as well populations that allow biobanks to open in their local communities.

History

Before the 1990s, scientists and researchers would themselves have to collect biological samples for each experiment they did. There was no unified system of sharing that was readily available to them. The effects of this could most easily be seen in the field of genetics, where scientists relied on prior research of a given sample to inform them of what areas to explore or tests to conduct regarding their own unique samples.

Eventually, this changed due to the realization that while diseases and disorders have genetic component, very few of them owe their manifestation to a single defective gene -- rather, they are caused by multiple genetic factors occurring on a multitude of different genes. As a result of this discovery, it was realized that it was necessary to perform genome-wide scans of a given biological sample vs the one-off genetic analysis of individual genes.

Around the time that this was happening, technological advances made it possible for the mass sharing of information. Thus, when data was collected, scientists doing genetic analysis found that they could coordinate their research efforts and have their work contribute to a larger body of knowledge in the field of genetics itself, thus allowing researchers the world over to access information derived from each other's work. Where before, genetics research was originally limited to a single laboratory or institution, now it was placed into unified and networked databases that the scientific community could access instantaneously with nothing more than an internet connection and computer. These were the world's first biobanks.

The development of these biobanks was far reaching. The sharing of the data derived from widespread sharing of genome-wide scanning led to the discovery of many single-nucleotide polymorphisms -- basically genetic variants. Indeed, in the ten years following the implementation of genome wide scans and the biobanking system, the number of discovered polymorphisms increased by a factor of fifty.

However, this didn't solve every problem. The first biobanks were storehouses for genetic information and research results. Another important area for biological research though, was that of phenotypic data. While genetic data can be gathered through a blood, saliva, or other biological sample, phenotypic data has to be collected through physical observation and examination of the subject that a given genetic sample can be derived from. This data includes information derived from interviews, physical assessment, review of medical history, or any other source of data that cannot be derived solely from a subject's genetic material.

Moreover, due to the nature of how phenotypic data is gathered, there were (and are) ethical considerations as to the rights of the subjects that data is derived from. These considerations became especially pertinent as biobanks began collecting phenotypic data and connecting it to genotypic data for the purposes of research and data sharing among scientists and institutions.^[1]

By the late 2000s, scientists had stored more than two hundred and seventy million biological samples and specimens in biobanks in the United States alone, and had collection rate of twenty million new samples additions per year. However, this is a trend that goes outside the United States, and are reflective of similar setups around the globe. The development of this massive catelog of biological samples has lead to a massive paradigm shift in the way genetic research data is shared, as there has never before been a time in history when scientists in this field have had access to such a massive number of samples and data.

This access has not been without controversy however, and some of the challenges raised by the rise of biobanks have included: the fairness of collecting sample donations and data 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 issues, researchers and policy makers began to require new systems of research governance.^[2]

Types of Biobanks

References

1. ↑ Greely, H. T. (2007). "The Uneasy Ethical and Legal Underpinnings of Large-Scale Genomic Biobanks". Annual Review of Genomics and Human Genetics 8: 343–364. doi:10.1146/annurev.genom.7.080505.115721. PMID 17550341.
2. ↑ Haga, S.; Beskow, L. (2008). "Ethical, Legal, and Social Implications of Biobanks for Genetics Research". Genetic Dissection of Complex Traits. Advances in Genetics 60. pp. 505–544. doi:10.1016/S0065-2660(07)00418-X. ISBN 9780123738837. PMID 18358331.