The "over-researched community" : an exploration of stakeholder perceptions and ethical analysis.
Research in resource-limited, multi-cultural contexts raises complex ethical concerns. The term ‘over-researched community’ (ORC) has increasingly been raised as an ethical concern and potential barrier to community participation in research. However, the term lacks conceptual clarity and is omitted from established ethical guidelines and academic literature. In light of the concern being raised in relation to vitally needed HIV prevention research in developing countries, a critical exploration of the meaning of the notion was undertaken. Guided by Emanuel et al.’s (2004) eight principles for ethically sound research in developing countries, this study explored the relevance and meaning of the terms ‘over-research’ and ‘over-researched community’ through a thorough review of ethical guidance documents and analysis of key stakeholder perspectives. In-depth interviews were conducted with 23 resource persons from research ethics committees, community advisory boards and research organisations in South Africa. Interviews were transcribed and translated where necessary and data were analysed thematically. ‘Over-research’ was found to reflect a conglomeration of ethical concerns, often being used as a proxy for existing ethical concepts. ‘Over-research’ might be interpreted to mean exploitation. However, exploitation itself could mean a range of different things. ‘Over-research’ seemed fundamentally linked to disparate positions and perspectives between different stakeholders in the research interaction, arising from challenges in inter-stakeholder relationships. Analysis of the data suggests that using the term may lead to an obscured understanding of real or perceived ethical transgressions, making it difficult to intervene to address the underlying concerns. It is recommended that the term not be used in research ethics discourse. However, because it represents other legitimate concerns, it should not be dismissed without careful exploration.
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Singer, Peter A.; Taylor, Andrew D.; Daar, Abdallah S.; Upshur, Ross E. G.; Singh, Jerome Amir.; Lavery, James V. (Plos., 2007-09)The Grand Challenges initiative has 44 projects worldwide aimed at addressing diseases of the poor. What are the ethical, social, and cultural issues that the initiative faces?
Grand challenges in global health : ethical, social, and cultural issues based on key informant perspectives. Berndtson, Kathryn.; Daid, Tina.; Tracy, C. Shawn.; Bhan, Anant.; Cohen, Emma R. M.; Upshur, Ross E. G.; Singh, Jerome Amir.; Lavery, James V.; Singer, Peter A. (Plos., 2007)The authors interviewed key informants from the developing world and the Grand Challenges investigators to explore their ethical, social, and cultural concerns about the program.
Grand challenges in global health : engaging civil society organizations in biomedical research in developing countries. Bhan, Anant.; Singh, Jerome Amir.; Upshur, Ross E. G.; Singer, Peter A.; Daar, Abdallah S. (Plos., 2007-09)The authors discuss the different types of civil society organizations, their role in biomedical research, and the advantages and challenges of working with them.