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

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

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.

Suggested Citation

  • Marsh, Vicki & Kombe, Francis & Fitzpatrick, Ray & Molyneux, Sassy & Parker, Michael, 2013. "Managing misaligned paternity findings in research including sickle cell disease screening in Kenya: ‘Consulting communities’ to inform policy," Social Science & Medicine, Elsevier, vol. 96(C), pages 192-199.
    • Handle: RePEc:eee:socmed:v:96:y:2013:i:c:p:192-199
    DOI: 10.1016/j.socscimed.2013.07.028
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    References listed on IDEAS

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    1. Marsh, Vicki & Kamuya, Dorcas & Rowa, Yvonne & Gikonyo, Caroline & Molyneux, Sassy, 2008. "Beginning community engagement at a busy biomedical research programme: Experiences from the KEMRI CGMRC-Wellcome Trust Research Programme, Kilifi, Kenya," Social Science & Medicine, Elsevier, vol. 67(5), pages 721-733, September.
    2. Horstman, Klasien & Finkler, Kaja, 2011. "Genetics, health care, family and kinship in a global perspective: Situated processes of co-construction," Social Science & Medicine, Elsevier, vol. 72(11), pages 1739-1742, June.
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    Cited by:

    1. Jonas Lander & Tobias Hainz & Irene Hirschberg & Daniel Strech, 2014. "Current Practice of Public Involvement Activities in Biomedical Research and Innovation: A Systematic Qualitative Review," PLOS ONE, Public Library of Science, vol. 9(12), pages 1-17, December.

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