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Open Access Research article

Consulting communities on feedback of genetic findings in international health research: sharing sickle cell disease and carrier information in coastal Kenya

Vicki Marsh123*, Francis Kombe1, Raymond Fitzpatrick4, Thomas N Williams125, Michael Parker3 and Sassy Molyneux123

Author Affiliations

1 Kenya Medical Research Institute (KEMRI) Wellcome Trust Research Programme, PO Box 230, Kilifi 80108, Kenya

2 Centre for Tropical Medicine, Nuffield Department of Medicine, Oxford University, Churchill Hospital, Old Road, Oxford OX3 7LT, UK

3 Ethox Centre, Nuffield Department of Population Health, Oxford University, Rosemary Rue Building, Old Road Campus, Old Road, Oxford OX3 7LF, UK

4 Nuffield Department of Population Health, Oxford University, Rosemary Rue Building, Old Road Campus, Old Road, Oxford OX3 7LF, UK

5 Department of Medicine, Imperial College, St Mary’s Hospital, London W21NY, UK

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BMC Medical Ethics 2013, 14:41  doi:10.1186/1472-6939-14-41

Published: 14 October 2013

Abstract

Background

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.

Methods

Between June 2010 and July 2011, we consulted 62 purposively selected Kilifi residents on how researchers should manage study-generated sickle cell disease findings. Methods drew on a series of deliberative informed small group discussions. Data were analysed thematically, using charts, to describe participants’ perceptions of the importance of disclosing findings, including reasoning, difference and underlying values. Themes were derived from the underlying research questions and from issues emerging from discussions. Data interpretation drew on relevant areas of social science and bioethics literature.

Results

Perceived health and social benefits generated strong support for disclosing findings on sickle cell disease, but the balance of social benefits and harms was less clear for sickle cell trait. Many forms of health and social benefits and harms of information-sharing were identified, with important underlying values related to family interests and the importance of openness. The influence of micro and macro level contextual features and prioritization of values led to marked diversity of opinion.

Conclusions

The approach demonstrates a high ethical importance in many malaria endemic low-to-middle income country settings of disclosing sickle cell disease findings generated during research, alongside provision of effective care and locally-informed counselling. Since these services are central to the benefits of disclosure, health researchers whose studies include screening for sickle cell disease should actively promote the development of health policy and services for this condition in situations of unmet need, including through the prior development of collaborative partnerships with government health managers and providers. Community consultation can importantly enrich ethical debate on research practice where in-depth exploration of informed views and the potential for difference are taken into account.

Keywords:
Kenya; Africa; Sickle cell disease; Community consultation; Genetic findings; Genetic and genomics research; Deliberative methods; Empirical ethics