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      The ethics of sustainable genomic research in Africa

      editorial
      Author(s): ,
      Publication date (Electronic):
      Journal: Genome Biology
      Publisher: BioMed Central

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          Abstract

          Michael Parker and Dominic Kwiatkowski discuss important ethical considerations for sustainable genomics research in Africa.

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          Best Practices for Ethical Sharing of Individual-Level Health Research Data From Low- and Middle-Income Settings

          Phaik Cheah, Spencer Denny, Irene Jao … (2015)
          Sharing individual-level data from clinical and public health research is increasingly being seen as a core requirement for effective and efficient biomedical research. This article discusses the results of a systematic review and multisite qualitative study of key stakeholders’ perspectives on best practices in ethical data sharing in low- and middle-income settings. Our research suggests that for data sharing to be effective and sustainable, multiple social and ethical requirements need to be met. An effective model of data sharing will be one in which considered judgments will need to be made about how best to achieve scientific progress, minimize risks of harm, promote fairness and reciprocity, and build and sustain trust.
          Article 0 comments Cited 44 times – based on 0 reviews     Review now
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            The H3Africa policy framework: negotiating fairness in genomics

            Jantina de Vries, Paulina Tindana, Katherine Littler … (2015)
            Human Heredity and Health in Africa (H3Africa) research seeks to promote fair collaboration between scientists in Africa and those from elsewhere. Here, we outline how concerns over inequality and exploitation led to a policy framework that places a firm focus on African leadership and capacity building as guiding principles for African genomics research.
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              Ethical Data Release in Genome-Wide Association Studies in Developing Countries

              Michael Parker, Susan J Bull, Jantina de Vries … (2009)
              Michael Parker and colleagues discuss the ethical issues associated with data release from genome-wide association studies in developing countries.
              Article 0 comments Cited 35 times – based on 0 reviews     Review now
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                Author and article information

                Contributors
                Michael Parker: Michael.parker@ethox.ox.ac.uk
                Dominic P. Kwiatkowski: dominic@well.ox.ac.uk
                Journal
                Journal ID (nlm-ta): Genome Biol
                Journal ID (iso-abbrev): Genome Biol
                Title: Genome Biology
                Publisher: BioMed Central (London )
                ISSN (Print): 1474-7596
                ISSN (Electronic): 1474-760X
                Publication date (Electronic): 8 March 2016
                Publication date PMC-release: 8 March 2016
                Publication date Collection: 2016
                Volume: 17
                Electronic Location Identifier: 44
                Affiliations
                [ ]The Ethox Centre, Nuffield Department of Population Health, University of Oxford, Oxford, OX3 7LF UK
                [ ]The Wellcome Trust Centre for Human Genetics, University of Oxford, Oxford, OX3 7BN UK
                [ ]The Wellcome Trust Sanger Institute, Hinxton, Cambridge, CB10 1SA UK
                Article
                Publisher ID: 914
                DOI: 10.1186/s13059-016-0914-3
                PMC ID: 4782358
                PubMed ID: 26956719
                SO-VID: 499bbd46-aec5-4e3b-9515-3230c34e494f
                Copyright © © Parker and Kwiatkowski. 2016
                License:

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. 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.

                History
                Funding
                Funded by: Wellcome Trust (GB)
                Award ID: 096527
                Award Recipient :
                Funded by: FundRef http://dx.doi.org/10.13039/100004440, Wellcome Trust;
                Award ID: 090770
                Award Recipient :
                Categories
                Subject: Comment
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                issue-copyright-statement © The Author(s) 2016

                ScienceOpen disciplines: Genetics
                Data availability:
                ScienceOpen disciplines: Genetics

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