For Publishers
DiscoveryMetadataPeer reviewHostingPublishing
For Researchers
JoinPublishReviewCollect
Register
Blog
About
Search
Advanced search
My ScienceOpen
Search
For Publishers
For Researchers
Blog
About
1
views
12
references
 Top references
cited by
12
    
0 reviews
 Review
0
comments
 Comment
0
recommends
+1 Recommend
0 collections
    0
    shares
      820
      similar
       All similar
      • Record: found
      • Abstract: found
      • Article: found
      Is Open Access

      Public trust and global biobank networks

      research-article

      Read this article at

      ScienceOpenPublisherPMC
      Bookmark
          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Background

          Biobanks provide an important foundation for genomic and personalised medicine. In order to enhance their scientific power and scope, they are increasingly becoming part of national or international networks. Public trust is essential in fostering public engagement, encouraging donation to, and facilitating public funding for biobanks. Globalisation and networking of biobanking may challenge this trust.

          Methods

          We report the results of an Australian study examining public attitudes to the networking and globalisation of biobanks. The study used quantitative and qualitative methods in conjunction with bioethical analysis in order to determine factors that may contribute to, and threaten, trust.

          Results

          Our results indicate a generally high level of trust in biobanks and in medical research more broadly. Key factors that can reduce perceived trustworthiness of biobanks are commercialisation and involvement in global networking.

          Conclusions

          We conclude that robust ethical oversight and governance standards can both promote trust in global biobanking and ensure that this trust is warranted.

          Related collections

          Most cited references12

          • Record: found
          • Abstract: found
          • Article: not found

          Identity inference of genomic data using long-range familial searches

          Yaniv Erlich, Tal Shor, Itsik Pe’er … (2018)
          Consumer genomics databases have reached the scale of millions of individuals. Recently, law enforcement authorities have exploited some of these databases to identify suspects via distant familial relatives. Using genomic data of 1.28 million individuals tested with consumer genomics, we investigated the power of this technique. We project that about 60% of the searches for individuals of European-descent will result in a third cousin or closer match, which can allow their identification using demographic identifiers. Moreover, the technique could implicate nearly any US-individual of European-descent in the near future. We demonstrate that the technique can also identify research participants of a public sequencing project. Based on these results, we propose a potential mitigation strategy and policy implications to human subject research.
          Article 0 comments Cited 91 times – based on 0 reviews     Review now
            Bookmark
            • Record: found
            • Abstract: found
            • Article: not found

            The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research.

            Christine Critchley, Dianne Nicol, Margaret Otlowski (2015)
            The necessity for biobanks to share their resources with third parties poses potential risks to public trust and the intention to participate in genetic research. We explore the effects of data sharing and the type of third-party access (public vs. private) on public trust and, in turn, the intention to participate in biobank research.
            Article 0 comments Cited 30 times – based on 0 reviews     Review now
              Bookmark
              • Record: found
              • Abstract: found
              • Article: not found

              Understanding public reactions to commercialization of biobanks and use of biobank resources.

              Dianne Nicol, Christine Critchley, Rebekah E. McWhirter … (2016)
              Biobanks will be essential to facilitate the translation of genomic research into real improvements to healthcare. Biobanking is a long-term commitment, requiring public support as well as appropriate regulatory, social and ethical guidelines to realize this promise. There is a growing body of research that explores the necessary conditions to ensure public trust in biomedical research, particularly in the context of biobanking. Trust is, however, a complex relationship. More analysis of public perceptions, attitudes and reactions is required to understand the primary triggers that influence gain and loss of trust. Further, the outcomes of these analyses require detailed consideration to determine how to promote trustworthy institutions and practices. This article uses national survey data, combined with the results of a community consultation that took place in Tasmania, Australia in 2013, to analyze the specific issue of public reactions to commercialization of biobanks and their outputs. This research will enhance the ability of biobanks to respond preemptively to public concerns about commercialization by establishing and maintaining governance frameworks that are responsive to those concerns. The results reveal that it is possible to counter the 'natural prejudice' that many people have against commercialization through independent governance of biobank resources and transparency with regard to commercial involvement. Indeed, most participants agreed that they would rather have a biobank with commercial involvement than none at all. This analysis provides nuanced conclusions about public reactions towards commercialization and equips researchers and biobank operators with data on which to base policies and make governance decisions in order to tackle participant concerns respectfully and responsively.
              Article 0 comments Cited 28 times – based on 0 reviews     Review now
                Bookmark
                All references

                Author and article information

                Contributors
                Lisa Dive:
                ORCID: http://orcid.org/0000-0001-6655-5138
                lisa.dive@sydney.edu.au
                Christine Critchley: ccritchley@swin.edu.au
                Margaret Otlowski: margaret.otlowski@utas.edu.au
                Paul Mason: pamason@zoo.nsw.gov.au
                Miriam Wiersma: miriam.wiersma@sydney.edu.au
                Edwina Light: edwina.light@sydney.edu.au
                Cameron Stewart: cameron.stewart@sydney.edu.au
                Ian Kerridge: ian.kerridge@sydney.edu.au
                Wendy Lipworth: wendy.lipworth@sydney.edu.au
                Journal
                Journal ID (nlm-ta): BMC Med Ethics
                Journal ID (iso-abbrev): BMC Med Ethics
                Title: BMC Medical Ethics
                Publisher: BioMed Central (London )
                ISSN (Electronic): 1472-6939
                Publication date (Electronic): 15 August 2020
                Publication date PMC-release: 15 August 2020
                Publication date Collection: 2020
                Volume: 21
                Electronic Location Identifier: 73
                Affiliations
                [1 ]GRID grid.1013.3, ISNI 0000 0004 1936 834X, Sydney Health Ethics, , University of Sydney, ; Sydney, Australia
                [2 ]GRID grid.1009.8, ISNI 0000 0004 1936 826X, Department of Psychological Sciences, School of Health Sciences, , Swinburne University of Technology; and Centre for Law and Genetics, University of Tasmania, ; Hobart, Australia
                [3 ]GRID grid.1009.8, ISNI 0000 0004 1936 826X, Faculty of Law, University of Tasmania, ; Hobart, Australia
                [4 ]GRID grid.452876.a, Taronga Institute of Science and Learning, Taronga Conservation Society, ; Mosman, Australia
                Author information
                http://orcid.org/0000-0001-6655-5138
                Article
                Publisher ID: 515
                DOI: 10.1186/s12910-020-00515-0
                PMC ID: 7429755
                PubMed ID: 32799859
                SO-VID: 104876b0-6fa7-4700-9c4e-a28290bf971c
                Copyright © © The Author(s) 2020
                License:

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                Date received : 27 August 2019
                Date accepted : 5 August 2020
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000925, National Health and Medical Research Council;
                Award ID: APP1083980
                Award Recipient :
                Categories
                Subject: Research Article
                Custom metadata
                issue-copyright-statement © The Author(s) 2020

                ScienceOpen disciplines: Medicine
                Keywords: biobanks,trust,globalisation,commercialisation
                Data availability:
                ScienceOpen disciplines: Medicine
                Keywords: biobanks, trust, globalisation, commercialisation

                Comments

                Comment on this article

                scite_

                Similar content820

                See all similar

                Cited by12

                See all cited by

                Most referenced authors71

                See all reference authors