BMC Medical Ethics 14 (1):41 (2013)

Abstract
International health research in malaria-endemic settings may include screening for sickle cell disease, given the relationship between this important genetic condition and resistance to malaria, generating questions about whether and how findings should be disclosed. The literature on disclosing genetic findings in the context of research highlights the role of community consultation in understanding and balancing ethically important issues from participants’ perspectives, including social forms of benefit and harm, and the influence of access to care. To inform research practice locally, and contribute to policy more widely, this study aimed to explore the views of local residents in Kilifi County in coastal Kenya on how researchers should manage study-generated information on sickle cell disease and carrier status
Keywords Kenya  Africa  Sickle cell disease  Community consultation  Genetic findings  Genetic and genomics research  Deliberative methods  Empirical ethics
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DOI 10.1186/1472-6939-14-41
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Toward Methodological Innovation in Empirical Ethics Research.Michael Dunn, Mark Sheehan, Tony Hope & Michael Parker - 2012 - Cambridge Quarterly of Healthcare Ethics 21 (4):466-480.

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