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The Johns Hopkins-Fogarty African Bioethics Training ProgramAnnual institutional training partnerships in bioethics for institutions based in sub-Saharan Africa.
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Bookmarked by Joseph Ali on 7 Oct 2011
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A bibliography of empirical research on consent and community engagementGlobal Health Bioethics has created a bibliography of empirical research on community engagement and seeking consent to research in developing countries. This will be regularly updated - please advise us of additional papers at info@globalhealthreviewers.org.
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Bookmarked by Tamzin Furtado on 22 Sep 2011
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From consent to institutions: Designing adaptive governance for genomic biobanksA new paper on the topic of consent and governance for biobanks. This paper is restricted access and must be purchased from the Social Science & Medicine website. Social Science & Medicine, Volume 73, Issue 3, August 2011, Pages 367-374. Abstract: Biobanks are increasingly hailed as powerful tools to advance health research. The social and ethical challenges associated with the implementation and operation of biobanks are equally well-documented. One of the proposed solutions to these challenges involves trading off a reduction in the specificity of informed consent protocols with an increased emphasis on governance. However, little work has gone into formulating what such governance might look like. In this paper, we suggest four general principles that should inform biobank governance and illustrate the enactment of these principles in a proposed governance model for a particular population-scale biobank, the British Columbia (BC) Generations Project. We begin by outlining four principles that we see as necessary for informing sustainable and effective governance of biobanks: (1) recognition of research participants and publics as a collective body, (2) trustworthiness, (3) adaptive management, and (4) fit between the nature of a particular biobank and the specific structural elements of governance adopted. Using the BC Generations Project as a case study, we then offer as a working model for further discussion the outlines of a proposed governance structure enacting these principles. Ultimately, our goal is to design an adaptive governance approach that can protect participant interests as well as promote effective translational health sciences.
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Bookmarked by Dina Bogecho on 4 Aug 2011
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Just Published: UNESCO Bioethics Core Curriculum Casebook SeriesThe Division of Ethics of Science and Technology is pleased to announce the following two recent publications in English produced as supplements to the UNESCO Bioethics Core Curriculum: * Casebook on Human Dignity and Human Rights, and The new casebooks are part of the UNESCO Bioethics Core Curriculum Casebook Series, designed to be used with the Core Curriculum, or as stand-alone study material for one of the bioethical principles in the Declaration. In order to encourage wide dissemination and usage of this series, the casebooks are freely available in hardcopy, in CD-ROM as well as for electronic download. These casebooks will also be translated into French soon. If you would like to receive hardcopies and/or CD-ROMs of the casebooks, please send an email to geobs@unesco.org with your mailing address and the number of copies of each item (subject to the availability of stock). Electronic copies of the casebooks and the core curriculum are available for download as follows:
Casebook on Human Dignity and Human Rights (in English only): http://unesdoc.unesco.org/images/0019/001923/192371e.pdf
Casebook on Benefit and Harm (in English only): http://unesdoc.unesco.org/images/0019/001923/192370e.pdf
UNESCO Bioethics Core Curriculum Section 1 (Syllabus): Arabic: http://unesdoc.unesco.org/images/0016/001636/163613a.pdf English: http://unesdoc.unesco.org/images/0016/001636/163613e.pdf French: http://unesdoc.unesco.org/images/0016/001636/163613f.pdf Russian: http://unesdoc.unesco.org/images/0016/001636/163613r.pdf Spanish: http://unesdoc.unesco.org/images/0016/001636/163613s.pdf
UNESCO Bioethics Core Curriculum Section 2 (Study Materials): A new version of Section 2 will be launched in a separate announcement in the coming weeks.
Further study materials related to the Bioethics Core Curriculum and to ethics teaching in general could also be accessed from the Global Ethics Observatory (GEObs) Database on Resources in Ethics (http://www.unesco.org/shs/ethics/geobs).
Please contact the Division for any questions, comments or feedback (email: geobs@unesco.org).
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Bookmarked by Dina Bogecho on 4 Aug 2011
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HHS announces proposal to improve rules protecting human research subjectsChanges under consideration would ensure the highest standards of protections for human subjects involved in research, while enhancing effectiveness of oversight The U.S. Department of Health and Human Services announced today that the federal government is contemplating various ways of enhancing the regulations overseeing research on human subjects. Before making changes to the regulations – which have been in place since 1991and are often referred to as the Common Rule – the government is seeking the public’s input on an array of issues related to the ethics, safety, and oversight of human research. The changes under consideration can be found in an Advance Notice of Proposed Rulemaking (ANPRM), Human Subjects Research Protections: Enhancing Protections for Research Subjects and Reducing Burden, Delay, and Ambiguity for Investigators, published in the July 25 Federal Register. The proposed changes are designed to strengthen protections for human research subjects.
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Bookmarked by Dina Bogecho on 1 Aug 2011
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