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  1. Genomics Governance: Advancing Justice, Fairness and Equity Through the Lens of the African Communitarian Ethic of Ubuntu.Nchangwi Syntia Munung, Jantina de Vries & Bridget Pratt - 2021 - Medicine, Health Care and Philosophy 24 (3):377-388.
    There is growing interest for a communitarian approach to the governance of genomics, and for such governance to be grounded in principles of justice, equity and solidarity. However, there is a near absence of conceptual studies on how communitarian-based principles, or values, may inform, support or guide the governance of genomics research. Given that solidarity is a key principle in Ubuntu, an African communitarian ethic and theory of justice, there is emerging interest about the extent to which Ubuntu could offer (...)
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  • Docile Bodies: Transnational Research Ethics as Biopolitics.M. T. Lysaught - 2009 - Journal of Medicine and Philosophy 34 (4):384-408.
    This essay explores the claim that bioethics has become a mode of biopolitics. It seeks to illuminate one of the myriad of ways that bioethics joins other institutionalized discursive practices in the task of producing, organizing, and managing the bodies—of policing and controlling populations—in order to empower larger institutional agents. The focus of this analysis is the contemporary practice of transnational biomedical research. The analysis is catalyzed by the enormous transformation in the political economy of transnational research that has occurred (...)
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  • Introduction.Ross E. G. Upshur - 2008 - Journal of Academic Ethics 6 (4):271-275.
    Clinical research is now a global enterprise. However, research ethics capacity has lagged behind the growth and expansion of clinical research in low and middle income countries. To address this mismatch, the Fogarty International Center of the National Institutes of Health has created a program to fund education in research ethics. This series of articles describes the experiences of graduates from 5 nations of the University of Toronto’s Joint Centre for Bioethics International Masters of Health Science Program. The program has (...)
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  • Ethical Issues in Medical Research in the Developing World: A Report on a Meeting Organised by Fondation Mérieux.Christophe Perrey, Douglas Wassenaar, Shawn Gilchrist & Bernard Ivanoff - 2009 - Developing World Bioethics 9 (2):88-96.
  • Editorial – Ethical Practice and Genomic Research.Michael Parker & Janet Seeley - 2020 - Global Bioethics 31 (1):164-168.
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  • What Constitutes Good Ethical Practice in Genomic Research in Africa? Perspectives of Participants in a Genomic Research Study in Uganda.Janet Seeley, Oliver Mweemba, Paulina Tindana, Michael Parker, Jantina de Vries & Rwamahe Rutakumwa - 2020 - Global Bioethics 31 (1):169-183.
    ABSTRACT Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics (...)
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  • Collaborative International Research: Ethical and Regulatory Issues Pertaining to Human Biological Materials at a South African Institutional Research Ethics Committee.Aslam Sathar, Amaboo Dhai & Stephan van der Linde - 2014 - Developing World Bioethics 14 (3):150-157.
  • Collaborative International Research: Ethical and Regulatory Issues Pertaining to Human Biological Materials at a South African Institutional Research Ethics Committee.Aslam Sathar, Amaboo Dhai & Stephan Linde - 2014 - Developing World Bioethics 14 (3):150-157.
    Human Biological Materials are an invaluable resource in biomedical research. Objective To determine if researchers and a Research Ethics Committee at a South African institution addressed ethical issues pertaining to HBMs in collaborative research with developed countries. Study Design Ethically approved retrospective cross-sectional descriptive audit. Results Of the 1305 protocols audited, 151 fulfilled the study's inclusion criteria. Compared to other developed countries, a majority of sponsors were from the USA . The principle investigators in all 151 protocols informed the REC (...)
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  • A Qualitative Study Exploring Stakeholder Perspectives on the Use of Biological Samples for Future Unspecified Research in Malawi.Limbanazo Matandika, Ruby Tionenji Ngóngóla, Khama Mita, Lucinda Manda-Taylor, Kate Gooding, Daniel Mwale, Francis Masiye & Joseph Mfutso-Bengo - 2020 - BMC Medical Ethics 21 (1):1-10.
    BackgroundThere is growing interest in the collection, storage and reuse of biological samples for future research. Storage and future use of biological samples raise ethical concerns and questions about approaches that safeguard the interests of participants. The situation is further complicated in Africa where there is a general lack of governing ethical frameworks that could guide the research community on appropriate approaches for sample storage and use. Furthermore, there is limited empirical data to guide development of such frameworks. A qualitative (...)
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  • Challenges in Biobank Governance in Sub-Saharan Africa.Ciara Staunton & Keymanthri Moodley - 2013 - BMC Medical Ethics 14 (1):35.
    Biological sample and data transfer within and out of Africa is steeped in controversy With the H3Africa project now aiming to establish biobanks in Africa, it is essential that there are ethical and legal governance structures in place to oversee the operation of these biobanks. Such governance is essential to ensuring that donors are protected, that cultural perspectives are respected and that researchers have a ready availability of ethically sourced biological samples.
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  • Access and Use of Human Tissues From the Developing World: Ethical Challenges and a Way Forward Using a Tissue Trust.Claudia I. Emerson, Peter A. Singer & Ross Eg Upshur - 2011 - BMC Medical Ethics 12 (1):2.
    BackgroundScientists engaged in global health research are increasingly faced with barriers to access and use of human tissues from the developing world communities where much of their research is targeted. In part, the problem can be traced to distrust of researchers from affluent countries, given the history of 'scientific-imperialism' and 'biocolonialism' reflected in past well publicized cases of exploitation of research participants from low to middle income countries.DiscussionTo a considerable extent, the failure to adequately engage host communities, the opacity of (...)
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  • Community Engagement and the Human Infrastructure of Global Health Research.Katherine F. King, Pamela Kolopack, Maria W. Merritt & James V. Lavery - 2014 - BMC Medical Ethics 15 (1):84.
    Biomedical research is increasingly globalized with ever more research conducted in low and middle-income countries. This trend raises a host of ethical concerns and critiques. While community engagement has been proposed as an ethically important practice for global biomedical research, there is no agreement about what these practices contribute to the ethics of research, or when they are needed.
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  • Research Ethics and International Epidemic Response: The Case of Ebola and Marburg Hemorrhagic Fevers.Philippe Calain, Nathalie Fiore, Marc Poncin & Samia A. Hurst - 2009 - Public Health Ethics 2 (1):7-29.
    Institute for Biomedical Ethics, Geneva University Medical School * Corresponding author: Médecins Sans Frontières (OCG), rue de Lausanne 78, CH-1211 Geneva 21, Switzerland. Tel.: +41 (0)22 849 89 29; Fax: +41 (0)22 849 84 88; Email: philippe_calain{at}hotmail.com ' + u + '@' + d + ' '//--> Abstract Outbreaks of filovirus (Ebola and Marburg) hemorrhagic fevers in Africa are typically the theater of rescue activities involving international experts and agencies tasked with reinforcing national authorities in clinical management, biological diagnosis, sanitation, (...)
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  • Ethical Issues in Human Genomics Research in Developing Countries.Jantina de Vries, Susan J. Bull, Ogobara Doumbo, Muntaser Ibrahim, Odile Mercereau-Puijalon, Dominic Kwiatkowski & Michael Parker - 2011 - BMC Medical Ethics 12 (1):5.
    BackgroundGenome-wide association studies provide a powerful means of identifying genetic variants that play a role in common diseases. Such studies present important ethical challenges. An increasing number of GWAS is taking place in lower income countries and there is a pressing need to identify the particular ethical challenges arising in such contexts. In this paper, we draw upon the experiences of the MalariaGEN Consortium to identify specific ethical issues raised by such research in Africa, Asia and Oceania.DiscussionWe explore ethical issues (...)
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  • Community Engagement Strategies for Genomic Studies in Africa: A Review of the Literature. [REVIEW]Paulina Tindana, Jantina de Vries, Megan Campbell, Katherine Littler, Janet Seeley, Patricia Marshall, Jennifer Troyer, Morisola Ogundipe, Vincent Pius Alibu, Aminu Yakubu & Michael Parker - 2015 - BMC Medical Ethics 16 (1):24.
    Community engagement has been recognised as an important aspect of the ethical conduct of biomedical research, especially when research is focused on ethnically or culturally distinct populations. While this is a generally accepted tenet of biomedical research, it is unclear what components are necessary for effective community engagement, particularly in the context of genomic research in Africa.
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  • Understanding Biobanking: An Assessment of the Public Engagement Speaking Book Intervention Biobanking and Me.A. Bedeker, D. Anderson, T. Lose, Y. Mgwatyu, R. Luus, R. Blignaut & A. Christoffels - 2019 - South African Journal of Bioethics and Law 12 (2):87.
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  • CQ Sources/Bibliography.Bette Anton - 1999 - Cambridge Quarterly of Healthcare Ethics 8 (4):348-350.
    These CQ Sources were compiled by Bette Anton.
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  • Working with Concepts: The Role of Community in International Collaborative Biomedical Research.V. M. Marsh, D. K. Kamuya, M. J. Parker & C. S. Molyneux - 2011 - Public Health Ethics 4 (1):26-39.
    The importance of communities in strengthening the ethics of international collaborative research is increasingly highlighted, but there has been much debate about the meaning of the term ‘community’ and its specific normative contribution. We argue that ‘community’ is a contingent concept that plays an important normative role in research through the existence of morally significant interplay between notions of community and individuality. We draw on experience of community engagement in rural Kenya to illustrate two aspects of this interplay: (i) that (...)
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  • Ethical and Legal Implications of Whole Genome and Whole Exome Sequencing in African Populations.Galen Wright, Pieter Koornhof, Adebowale Adeyemo & Nicki Tiffin - 2013 - BMC Medical Ethics 14 (1):21.
    Rapid advances in high throughput genomic technologies and next generation sequencing are making medical genomic research more readily accessible and affordable, including the sequencing of patient and control whole genomes and exomes in order to elucidate genetic factors underlying disease. Over the next five years, the Human Heredity and Health in Africa (H3Africa) Initiative, funded by the Wellcome Trust (United Kingdom) and the National Institutes of Health (United States of America), will contribute greatly towards sequencing of numerous African samples for (...)
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  • CQ Sources/Bibliography.Bette Anton - 2009 - Cambridge Quarterly of Healthcare Ethics 18 (2):155-158.
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