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      A Report on the Workshop on Biobanking Informatics

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          Abstract

          The Workshop on Biobanking Informatics in NSW 2013 (WBIN13) was held on Friday, 10 May 2013 at The Wallace Wurth Building in the University of New South Wales. This report summarises the keynotes, presentations and discussions in WBIN13 which discusses current research in the field of Biobanking Informatics in Australia and internationally.

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          Biobanking: the foundation of personalized medicine.

          R Hewitt (2010)
          Biobanking has been identified as a key area for development in order to accelerate the discovery and development of new drugs. This review describes the recent advances in the field of biobanking and biospecimen research, with special reference to tumour banks which are the biobanks of primary interest in oncology. There is a dramatic deficiency of high-quality, well annotated cancer biospecimens. Biospecimen research is a fast developing field that will improve biobanking methodology and biobanking is becoming more professionally organized with increased attention to quality management. Biobank networks are developing rapidly in order to combine and share resources. Biobanking services must improve rapidly to serve the needs of personalized medicine and biospecimen research should be encouraged and supported at all levels from project funding to publication of results. Biobanks need to be run to high professional standards and the importance of adequate funding, training and certification must be emphasized. The growing presence of national and international biobank networks will allow biobanks to synergize. The development of a biobanking community will facilitate teamwork to overcome common challenges and enhance communication with multiple stakeholder groups.
          Article 0 comments Cited 73 times – based on 0 reviews     Review now
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            Biospecimen reporting for improved study quality (BRISQ).

            Joseph Hayes, Edward Seijo, Pierre Hainaut … (2011)
            Human biospecimens are subject to a number of different collection, processing, and storage factors that can significantly alter their molecular composition and consistency. These biospecimen preanalytical factors, in turn, influence experimental outcomes and the ability to reproduce scientific results. Currently, the extent and type of information specific to the biospecimen preanalytical conditions reported in scientific publications and regulatory submissions varies widely. To improve the quality of research utilizing human tissues, it is critical that information regarding the handling of biospecimens be reported in a thorough, accurate, and standardized manner. The Biospecimen Reporting for Improved Study Quality (BRISQ) recommendations outlined herein are intended to apply to any study in which human biospecimens are used. The purpose of reporting these details is to supply others, from researchers to regulators, with more consistent and standardized information to better evaluate, interpret, compare, and reproduce the experimental results. The BRISQ guidelines are proposed as an important and timely resource tool to strengthen communication and publications around biospecimen-related research and help reassure patient contributors and the advocacy community that the contributions are valued and respected.
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              Informed consent and biobanks: a population-based study of attitudes towards tissue donation for genetic research.

              B. Olofsson, Niels Lynøe, Tom Mjorndal … (2003)
              The procurement and usage of tissue samples has begun receiving increasing legal and ethical attention. The authors' aim was to develop an empirically based understanding of public attitudes to the use of tissue for research. A questionnaire was distributed to a randomized sample (n=1,000) of the population in the age group 18-85 in Västerbotten County, Sweden. The response rate was approximately 60%. There was a general acceptance of genetic research based on biobank material (71%) but, though it is often a prerequisite for tissue-based research, a majority (62%) would not allow researchers to examine their healthcare records without specific consent. A majority (66.8%) accepted surrogate decisions by research ethical committees; 48% of the respondents estimated that they would feel respected if they were notified each time a sample was used. When compared and ranked with other issues, informed consent was a principal concern to a minority (4%) only. Should research efforts generate information on future health risks, a majority (55%) would want to be told only if treatment was available. Though genetic research in bioethical debate is often viewed as a potential threat to the integrity of the donor, the confidentiality of medical records still seems to concern donors more. Research ethical committees have support in the majority of the population for some surrogate decisions. The current emphasis on the question of informed consent in policy making for biobank-based research does not seem to be reflected unambiguously in the concerns of the general public.
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                ArXiv ID:: 1505.07513

                ScienceOpen disciplines: Life sciences
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                ScienceOpen disciplines: Life sciences

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