Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana

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.

Keywords: Genetic counseling; Genetic testing; Prenatal diagnosis; Religion; Sickle cell disease; Spirituality.

Figure 1.

Model of relationships between religion/spirituality and sickle cell related health behaviors and research participation in Ghana. Faith is central (black shading), as a resource for coping, empowerment and autonomy, leading to informed decision making about health behaviors and/or research participation (green shading). Faith can also lead to disruption of or inaction in relation to health behaviors and/or research participation (red shading) when primarily associated with belief in a God controlled destiny or reliance on miracles. Additional influences on beliefs and behaviors are indicated in gray. Interventions that should be informed by cultural and religious norms/values are shown in blue. Interspersed throughout the model are details about the potential influences (i.e., discouragement of marriage of partners with AS, the value placed on children and extended family support are important societal norms; superstitions and some spiritual beliefs can lead to stigma and views such as the unacceptability of the use of blood samples in research; accurate knowledge is essential to families trusting their religious leaders to engage in shared decision making).