Managing misaligned paternity findings in research including sickle cell disease screening in Kenya: ‘Consulting communities’ to inform policy

Vicki Marsh, Francis Kombe, Ray Fitzpatrick, Sassy Molyneux and Michael Parker

Social Science & Medicine, 2013, vol. 96, issue C, 192-199

Abstract: The management of misaligned paternity findings raises important controversy worldwide. It has mainly, however, been discussed in the context of high-income countries. Genetic and genomics research, with the potential to show misaligned paternity, are becoming increasingly common in Africa. During a genomics study in Kenya, a dilemma arose over testing and sharing information on paternal sickle cell disease status. This dilemma may be paradigmatic of challenges in sharing misaligned paternity findings in many research and health care settings. Using a deliberative approach to community consultation to inform research practice, we explored residents' views on paternal testing and sharing misaligned paternity information. Between December 2009 and November 2010, 63 residents in Kilifi County were engaged in informed deliberative small group discussions, structured to support normative reflection within the groups, with purposive selection to explore diversity. Analysis was based on a modified framework analysis approach, drawing on relevant social science and bioethics literature.

Keywords: Kenya; Misaligned paternity; Genetic testing; Genetic and genomics research; Community consultation; Empirical ethics; Sickle cell disease; Africa (search for similar items in EconPapers)
Date: 2013
References: View references in EconPapers View complete reference list from CitEc
Citations: View citations in EconPapers (2)

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DOI: 10.1016/j.socscimed.2013.07.028

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