Evolutionary concepts in biobanking - the BC BioLibrary

Abstract

BackgroundMedical research to improve health care faces a major problem in the relatively limited availability of adequately annotated and collected biospecimens. This limitation is creating a growing gap between the pace of scientific advances and successful exploitation of this knowledge. Biobanks are an important conduit for transfer of biospecimens (tissues, blood, body fluids) and related health data to research. They have evolved outside of the historical source of tissue biospecimens, clinical pathology archives. Research biobanks have developed advanced standards, protocols, databases, and mechanisms to interface with researchers seeking biospecimens. However, biobanks are often limited in their capacity and ability to ensure quality in the face of increasing demand. Our strategy to enhance both capacity and quality in research biobanking is to create a new framework that repatriates the activity of biospecimen accrual for biobanks to clinical pathology.MethodsThe British Columbia (BC) BioLibrary is a framework to maximize the accrual of high-quality, annotated biospecimens into biobanks. The BC BioLibrary design primarily encompasses: 1) specialized biospecimen collection units embedded within clinical pathology and linked to a biospecimen distribution system that serves biobanks; 2) a systematic process to connect potential donors with biobanks, and to connect biobanks with consented biospecimens; and 3) interdisciplinary governance and oversight informed by public opinion.ResultsThe BC BioLibrary has been embraced by biobanking leaders and translational researchers throughout BC, across multiple health authorities, institutions, and disciplines. An initial pilot network of three Biospecimen Collection Units has been successfully established. In addition, two public deliberation events have been held to obtain input from the public on the BioLibrary and on issues including consent, collection of biospecimens and governance.ConclusionThe BC BioLibrary framework addresses common issues for clinical pathology, biobanking, and translational research across multiple institutions and clinical and research domains. We anticipate that our framework will lead to enhanced biospecimen accrual capacity and quality, reduced competition between biobanks, and a transparent process for donors that enhances public trust in biobanking.

Structuring Public Engagement for Effective Input in Policy Development on Human Tissue Biobanking

“…The BC Biolibrary is itself not a biobank; rather it functions as a network, complementing existing biobanks by improving quality and access to human biospecimens and enhancing the ability to collect biospecimens via standardized collection and annotation procedures. The BC Biolibrary is therefore concerned with not only the physical availability of sample to researcher but also the protocols whereby tissues are obtained from donors [41]. …”

IT Infrastructure Components for Biobanking

“…The major issues include the need to increase the quality and standardization of biospecimens collected, to enhance accrual capacity in terms of scale and disease representation, and above all, to maintain public trust in these activities [38]. Sung et al have further stated that inadequate and inefficient information systems for specialized support of all biobanking activities still present a rate-limiting challenge for even faster high quality translational research [16].…”

Public Perspectives on Biospecimen Procurement: What Biorepositories Should Consider

“…[1][2][3][4][5] Biobanks collect different types of biological materials from which DNA and RNA are often extracted, and are used to spur research into the genetic basis of a broad range of diseases. Currently, biobanks face numerous challenges, including insecure long-term funding, operational and quality control issues, ethical and legal challenges (such as how to obtain informed consent, whether and how to return research results, confidentiality, and commercialization and industry/ government access), lack of standardization, and slow recruitment.…”

“…Currently, biobanks face numerous challenges, including insecure long-term funding, operational and quality control issues, ethical and legal challenges (such as how to obtain informed consent, whether and how to return research results, confidentiality, and commercialization and industry/ government access), lack of standardization, and slow recruitment. 3,[6][7][8] Published rates of participation for individual biobanks range from 15% to 95% of individuals approached with the option of participating. [9][10][11] Many of the factors associated with the decision to participate in research are complex and cannot be easily changed, such as people's educational, sociodemographic and cultural backgrounds and health/genetic literacy.…”