title: Managing misaligned paternity findings in research including sickle cell disease screening in Kenya: 'consulting communities' to inform policy.
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. The methods generated in-depth individual and group reflection on morally important issues and uncovered wide diversity in views and values. Fundamental and conflicting values emerged around the importance of family interests and openness, underpinned by disagreement on the moral implications of marital infidelity and withholding truth. Wider consideration of ethical issues emerging in these debates supports locally-held reasoning that paternal sickle cell testing should not be undertaken in this context, in contrast to views that testing should be done with or without the disclosure of misaligned paternity information. The findings highlight the importance of facilitating wider testing of family members of affected children, contingent on the development and implementation of national policies for the management of this inherited disorder. Their richness also illustrates the potential for the approach adopted in this study to strengthen community consultation.
authors.affiliation: Kenya Medical Research Institute (KEMRI) Wellcome Trust Research Programme, Kilifi, Kenya; Centre for Tropical Medicine, Nuffield Department of Medicine, Oxford University, UK; The Ethox Centre, Public Health Department, Oxford University, UK. Electronic address: vmarsh@kemri-wellcome.org.
authors.forename: Vicki
authors.initials: V
authors.lastname: Marsh
authors.forename: Francis
authors.initials: F
authors.lastname: Kombe
authors.forename: Ray
authors.initials: R
authors.lastname: Fitzpatrick
authors.forename: Sassy
authors.initials: S
authors.lastname: Molyneux
authors.forename: Michael
authors.initials: M
authors.lastname: Parker
mesh_terms: D000755:Anemia, Sickle Cell / Q000235:genetics*; D001294:Attitude to Health; D003256:Community Participation; D030881:Disclosure / Q000941:ethics*; D005260:Female; D036281:Genetic Research; D005820:Genetic Testing; D006291:Health Policy; D006801:Humans; D007630:Kenya; D008297:Male; D010334:Paternity; D036301:Qualitative Research
keywords: Africa; Community consultation; Empirical ethics; Genetic and genomics research; Genetic testing; Kenya; Misaligned paternity; Sickle cell disease
references.citation: PLoS Med. 2009 Nov;6(11):e1000143
references.pmid: 19956792
references.citation: Int J Epidemiol. 2012 Jun;41(3):650-7
references.pmid: 22544844
references.citation: Bioethics. 2009 May;23(4):249-58
references.pmid: 19338525
references.citation: Camb Q Healthc Ethics. 2012 Oct;21(4):466-80
references.pmid: 22828041
references.citation: Am J Hum Genet. 1990 Jun;46(6):1200-13
references.pmid: 2339711
references.citation: Soc Sci Med. 2011 Jun;72(11):1739-42
references.pmid: 21663802
references.citation: PLoS Med. 2007 Sep;4(9):e273
references.pmid: 17850178
references.citation: Health Care Anal. 2009 Sep;17(3):217-35
references.pmid: 19139992
references.citation: Ethn Health. 2011 Aug-Oct;16(4-5):343-59
references.pmid: 21797722
references.citation: Dev World Bioeth. 2013 Apr;13(1):10-20
references.pmid: 23433404
references.citation: Bioethics. 1996 Apr;10(2):114-30
references.pmid: 11653245
references.citation: Public Health Ethics. 2011 Apr;4(1):26-39
references.pmid: 21416064
references.citation: Hastings Cent Rep. 2004 Jan-Feb;34(1):25-33
references.pmid: 15098404
references.citation: J Med Ethics. 2007 Aug;33(8):475-80
references.pmid: 17664309
references.citation: J Med Philos. 2007 Jul-Aug;32(4):359-73
references.pmid: 17712708
references.citation: Bioethics. 2014 Jul;28(6):302-12
references.pmid: 23444909
references.citation: BMC Med Ethics. 2010 Jul 15;11:13
references.pmid: 20633282
references.citation: Am J Bioeth. 2006 Nov-Dec;6(6):42-4; author reply W10-2
references.pmid: 17085408
references.citation: HEC Forum. 2006 Mar;18(1):18-36
references.pmid: 17076127
references.citation: Health Care Anal. 2008 Mar;16(1):1-6
references.pmid: 18080836
references.citation: J Infect Dis. 2004 Mar 1;189(5):930-7
references.pmid: 14976611
references.citation: Transplantation. 2009 May 27;87(10):1429-35
references.pmid: 19461476
references.citation: Eur J Hum Genet. 2006 Nov;14(11):1170-8
references.pmid: 16868560
references.citation: Lancet. 2001 Mar 31;357(9261):1033-5
references.pmid: 11293609
references.citation: Soc Sci Med. 2008 Sep;67(5):721-33
references.pmid: 18375028
references.citation: Am J Bioeth. 2006 Nov-Dec;6(6):8-17
references.pmid: 17085395
references.citation: Qual Health Res. 2005 May;15(5):620-34
references.pmid: 15802539