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J Community Genet. 2016 Jul;7(3):195-202. doi: 10.1007/s12687-016-0267-3. Epub 2016 Apr 18.

Community engagement to inform the development of a sickle cell counselor training and certification program in Ghana.

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Haematology and Sickle Cell Centre, London North West Healthcare NHS Trust, Central Middlesex Hospital, London, NW10 7NS, UK.
Imperial College London, London, UK.
University of California San Francisco Benioff Children's Hospital Oakland, Oakland, CA, USA.
Centers for Disease Control and Prevention, Atlanta, GA, USA.
International Confederation of Midwives Investing in Midwives Program, Accra, Ghana.
Sickle Cell Foundation of Ghana, Kumasi, Ghana.
Ashanti Region Health Promotion Office, Kumasi, Ghana.
National Newborn Screening Program for Sickle Cell Disease, Accra, Ghana.
Association of Public Health Laboratories, Silver Spring, MD, USA.
Sickle Cell Foundation Nigeria, Lagos, Nigeria.
Children's Hospital of Philadelphia, Philadelphia, PA, USA.


Sickle cell disease (SCD) and sickle cell trait (SCT) are highly prevalent in Africa. Despite public health implications, there is limited understanding of community issues for implementing newborn screening and appropriate family counseling. We conducted a 3-day workshop in Kumasi, Ghana, with community leaders as lay program development advisors to assist the development and implementation of a Sickle Cell Counselor Training and Certification Program. We employed qualitative methods to understand cultural, religious, and psychosocial dimensions of SCD and SCT, including the advisors' attitudes and beliefs in relation to developing a culturally sensitive approach to family education and counseling that is maximally suited to diverse communities in Ghana. We collated advisors' discussions and observations in order to understand community issues and potential challenges and guide strategies for advocacy in SCD family education and counseling. Results from the workshop revealed that community leaders representing diverse communities in Ghana were engaged constructively in discussions about developing a culturally sensitive counselor training program. Key findings included the importance of improved knowledge about SCD among the public and youth in particular, the value of stakeholders such as elders and religious and traditional leaders, and government expectations of reduced SCD births. We submitted a report to the Ministry of Health in Ghana with recommendations for the next steps in developing a national sickle cell counselor training program. We named the program "Genetic Education and Counseling for Sickle Cell Conditions in Ghana" (GENECIS-Ghana). The first GENECIS-Ghana Training and Certification Program Workshop was conducted from June 8 to 12, 2015.

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