Ethical issues in the export, storage and reuse of human biological samples in biomedical research: perspectives of key stakeholders in Ghana and KenyaReport as inadecuate




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BMC Medical Ethics

, 15:76

Ethics in Biomedical Research

Abstract

BackgroundFor 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 practices.

MethodsWe employed a qualitative strategy of inquiry for this research including in-depth interviews and focus group discussions with key research stakeholders in Kenya Nairobi and Kilifi, and Ghana Accra and Navrongo.

ResultsThe stakeholders interviewed emphasised the compelling scientific importance of sample export, storage and reuse, and acknowledged the existence of some structures governing these research practices, but they also highlighted the pressing need for a number of practical ethical concerns to be addressed in order to ensure high standards of practice and to maintain public confidence in international research collaborations. These concerns relate to obtaining culturally appropriate consent for sample export and reuse, understanding cultural sensitivities around the use of blood samples, facilitating a degree of local control of samples and sustainable scientific capacity building.

ConclusionDrawing on these findings and existing literature, we argue that the ethical issues arising in practice need to be understood in the context of the interactions between host research institutions and local communities and between collaborating institutions. We propose a set of ‘key points-to-consider’ for research institutions, ethics committees and funding agencies to address these issues.

KeywordsHuman biological samples Broad consent Research collaboration Sample export Africa AbbreviationsKWTRPKenya Wellcome Trust Research Programme

NHRCNavrongo Health Research Centre

FGDFocus group discussions

IDIIndepth interviews

RECResearch ethics committees

MTAMaterial transfer agreements

CECommunity engagement

CRCommunity representatives

FWFieldworkers

CSKICross study key informant.

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Author: Paulina Tindana - Catherine S Molyneux - Susan Bull - Michael Parker

Source: https://link.springer.com/



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