Biobank
[1][2] One definition is "an organized collection of human biological material and associated information stored for one or more research purposes.
"[3][4] 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.
[5] They may range in size from individual refrigerators to warehouses, and are maintained by institutions such as hospitals, universities, nonprofit organizations, and pharmaceutical companies.
[6][7] Population-based biobanks need no particular hospital affiliation because they take samples from large numbers of all kinds of people, perhaps to look for biomarkers for disease susceptibility in a general population.
[12] 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.
[13] 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.
[15][16] In November 2020 scientists began collecting living fragments, tissue and DNA samples of the endangered corals from the Great Barrier Reef for a precautionary biobank for potential future restoration and rehabilitation activities.
[19][20] The biobank keeps these specimens in good condition until a researcher needs them to conduct a test, do an experiment, or perform an analysis.
[citation needed] Biobanks, like other DNA databases, must carefully store and document access to samples and donor information.
[21] The samples must be maintained reliably with minimal deterioration over time, and they must be protected from physical damage, both accidental and intentional.
Archival systems de-identify samples to respect the privacy of donors and allow blinding of researchers to analysis.
[22] In contrast, Tonga and Estonia give ownership of biobank samples to the government, but their laws include strong protections of donor rights.
Biobanks typically try to adapt to the broader recommendations that are internationally accepted for human subject research and change guidelines as they become updated.
In 1999, the United States National Bioethics Advisory Commission issued a report containing policy recommendations about handling human biological specimens.
[11] In 2006, the Council of the European Union adopted a policy on human biological specimens, which was novel for discussing issues unique to biobanks.
[29] Considering the potential for substantial profit, researchers Mitchell and Waldby[27] argue that because biobanks enroll large numbers of the national population as productive participants, who allow their bodies and prospective medical histories to create a resource with commercial potential, their contribution should be seen as a form of "clinical labor" and therefore participants should also benefit economically.
