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  1. Legitimacy, Trust and Stakeholder Engagement: Biobanking in South Africa.Keymanthri Moodley - 2017 - Asian Bioethics Review 9 (4):325-334.
    Biobanking has become a global activity of growing relevance to research. The African continent is part of this global effort to collect, store and re-use samples and data. International research and capacity development efforts such as the Human Health and Heredity Africa project seek to empower African researchers and research participants alike. Given that African genetic diversity is a unique global resource, retaining samples and data on the continent is critical to building trust in communities who have been historically exploited (...)
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  • Health Research Ethics Committees in South Africa 12 years into democracy.Myer Landon & Moodley Keymanthri - 2007 - BMC Medical Ethics 8 (1):1-8.
    Background Despite the growth of biomedical research in South Africa, there are few insights into the operation of Research Ethics Committees (RECs) in this setting. We investigated the composition, operations and training needs of health RECs in South Africa against the backdrop of national and international guidelines. Methods The 12 major health RECs in South Africa were surveyed using semi-structured questionnaires that investigated the composition and functions of each REC as well as the operational issues facing committees. Results Health RECs (...)
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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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  • When bins blur: Patient perspectives on categories of results from clinical whole genome sequencing.Leila Jamal, Jill O. Robinson, Kurt D. Christensen, Jennifer Blumenthal-Barby, Melody J. Slashinski, Denise Lautenbach Perry, Jason L. Vassy, Julia Wycliff, Robert C. Green & Amy L. McGuire - 2017 - AJOB Empirical Bioethics 8 (2):82-88.
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  • The public understanding of science and public participation in regulated worlds.Rob P. Hagendijk - 2004 - Minerva 42 (1):41-59.
    This article discusses studies and politicalinitiatives concerned with enhancing publicinvolvement in major technological decisions.It argues that such decisions should include asignificant role for the mass media, andrespect for the diverse relations betweenscience and governance. The notion of`regulated worlds' is proposed as a startingpoint in a discourse that brings together themass media, science management, anddeliberative democracy.
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  • Public Health Ethics: Mapping the Terrain.James F. Childress, Ruth R. Faden, Ruth D. Gaare, Lawrence O. Gostin, Jeffrey Kahn, Richard J. Bonnie, Nancy E. Kass, Anna C. Mastroianni, Jonathan D. Moreno & Phillip Nieburg - 2002 - Journal of Law, Medicine and Ethics 30 (2):170-178.
    Public health ethics, like the field of public health it addresses, traditionally has focused more on practice and particular cases than on theory, with the result that some concepts, methods, and boundaries remain largely undefined. This paper attempts to provide a rough conceptual map of the terrain of public health ethics. We begin by briefly defining public health and identifying general features of the field that are particularly relevant for a discussion of public health ethics.Public health is primarily concerned with (...)
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  • To evaluate the effectiveness of health care ethics consultation based on the goals of health care ethics consultation: a prospective cohort study with randomization.Yen-Yuan Chen, Tzong-Shinn Chu, Yu-Hui Kao, Pi-Ru Tsai, Tien-Shang Huang & Wen-Je Ko - 2014 - BMC Medical Ethics 15 (1):1.
    The growing prevalence of health care ethics consultation (HCEC) services in the U.S. has been accompanied by an increase in calls for accountability and quality assurance, and for the debates surrounding why and how HCEC is evaluated. The objective of this study was to evaluate the effectiveness of HCEC as indicated by several novel outcome measurements in East Asian medical encounters.
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  • Hidden concerns of sharing research data by low/middle-income country scientists.Louise Bezuidenhout & Ereck Chakauya - 2018 - Global Bioethics 29 (1):39-54.
    ABSTRACTThere has considerable interest in bringing low/middle-income countries scientists into discussions on Open Data – both as contributors and users. The establishment of in situ data sharing practices within LMIC research institutions is vital for the development of an Open Data landscape in the Global South. Nonetheless, many LMICs have significant challenges – resource provision, research support and extra-laboratory infrastructures. These low-resourced environments shape data sharing activities, but are rarely examined within Open Data discourse. In particular, little attention is given (...)
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