TY - JOUR
T1 - Relation Between Religious Perspectives and Views on Sickle Cell Disease Research and Associated Public Health Interventions in Ghana
AU - Dennis-Antwi, Jemima A.
AU - Ohene-Frempong, Kwaku
AU - Anie, Kofi A.
AU - Dzikunu, Helen
AU - Agyare, Veronica A.
AU - Okyere Boadu, Richard
AU - Sarfo Antwi, Joseph
AU - Asafo, Mabel K.
AU - Anim-Boamah, Oboshie
AU - Asubonteng, Augustine K.
AU - Agyei, Solomon
AU - Wonkam, Ambroise
AU - Treadwell, Marsha J.
N1 - Publisher Copyright:
© 2018 National Society of Genetic Counselors
PY - 2019/2
Y1 - 2019/2
N2 - 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.
AB - 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.
KW - Genetic counseling
KW - Genetic testing
KW - Prenatal diagnosis
KW - Religion
KW - Sickle cell disease
KW - Spirituality
UR - http://www.scopus.com/inward/record.url?scp=85053264172&partnerID=8YFLogxK
U2 - 10.1007/s10897-018-0296-7
DO - 10.1007/s10897-018-0296-7
M3 - Article
AN - SCOPUS:85053264172
SN - 1059-7700
VL - 28
SP - 102
EP - 118
JO - Journal of Genetic Counseling
JF - Journal of Genetic Counseling
IS - 1
ER -