Ethical issues in the export, storage and reuse of human biological samples in biomedical research: perspectives of key stakeholders in Ghana and Kenya
BMC Medical Ethics 15 (1):76 (2014)
Abstract
For many decades, access to human biological samples, such as cells, tissues, organs, blood, and sub-cellular materials such as DNA, for use in biomedical research, has been central in understanding the nature and transmission of diseases across the globe. However, the limitations of current ethical and regulatory frameworks in sub-Saharan Africa to govern the collection, export, storage and reuse of these samples have resulted in inconsistencies in practice and a number of ethical concerns for sample donors, researchers and research ethics committees. This paper examines stakeholders’ perspectives of and responses to the ethical issues arising from these research practicesDOI
10.1186/1472-6939-15-76
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References found in this work
Seeking consent to genetic and genomic research in a rural Ghanaian setting: a qualitative study of the MalariaGEN experience. [REVIEW]P. Tindana, S. Bull, L. Amenga-Etego, J. Vries, R. Aborigo, K. Koram, D. Kwiatkowski & M. Parker - 2012 - BMC Medical Ethics 13 (1):15-15.
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.
Engaging Communities to Strengthen Research Ethics in Low‐Income Settings: Selection and Perceptions of Members of a Network of Representatives in Coastal K enya.Dorcas M. Kamuya, Vicki Marsh, Francis K. Kombe, P. Wenzel Geissler & Sassy C. Molyneux - 2013 - Developing World Bioethics 13 (1):10-20.
Challenges in biobank governance in Sub-Saharan Africa.Ciara Staunton & Keymanthri Moodley - 2013 - BMC Medical Ethics 14 (1):35.