Abstract
Sickle cell disease (SCD) is highly prevalent in Africa with a significant public health burden for under-resourced countries. We employed qualitative research methods to understand the ethical, legal, and social implications of conducting genomic research in SCD under the Human Heredity and Health in Africa (H3Africa) initiative. The present study focused on religious and cultural aspects of SCD with the view to identifying beliefs and attitudes relevant to public health interventions in Ghana. Thematic analyses from individual and group interviews revealed six key areas of importance, namely, reliance on a supreme being; religion as a disruptive influence on health behaviors; role of religious leaders in information sharing and decision-making; social, religious, and customary norms; health and religious/supernatural beliefs; and need for social education and support through church and community. Findings suggest that public health programs in Ghana should not only aim at increasing knowledge and awareness about SCD and its management but also create an understanding of the relevance of genomics and alternative technological advancement to diagnosis and ethical decision-making around available options for health seeking. Future research should engage communities to help address the ethical and social implications of a persuasive religious influence on SCD-related health decisions.
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The authors wish to thank Natasha Dean for her assistance with the preparation of the manuscript.
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The research reported in this publication was supported by the National Human Genome Research Institute of the National Institutes of Health under Award Number U01HG007459 (Wonkam PI).
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Dr. Dennis-Antwi made substantial contributions to the conception of the work; the acquisition, analysis, and interpretation of data for the work and in drafting and revising the work critically for important intellectual content. Drs. Treadwell and Anie made substantial contributions to the conception, design, analysis, and interpretation of data for the work and in drafting and revising the work critically for important intellectual content. Drs. Ohene-Frempong and Wonkam made substantial contributions to the conception and design of the work and in revising the work critically for important intellectual content. Ms. Dzikunu, Agyare, Asafo, Anim-Boamah and Mr. Okyere Boadu, JSarfo Antwi, and Agyei made substantial contributions to the acquisition of the data for the work and in revising of the work critically for important intellectual content. Mr. Asubonteng made substantial contributions to the analysis of the data and in revising of the work critically for important intellectual content. All authors gave the final approval of the version to be published and agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
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Authors Dennis-Antwi, Ohene-Frempong, Anie, Dzikunu, Agyare, Okyere Boadu, Sarfo Antwi, Asafo, Anim-Boamah, Asubonteng, Agyei, Wonkam and Treadwell declare that they do not have conflicts of interest.
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Dennis-Antwi, J.A., Ohene-Frempong, K., Anie, K.A. et al. Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana. J Genet Counsel (2018). https://doi.org/10.1007/s10897-018-0296-7
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DOI: https://doi.org/10.1007/s10897-018-0296-7