title: A call for policy action in sub-Saharan Africa to rethink diagnostics for pregnancy affected by sickle cell disease: differential views of medical doctors, parents and adult patients predict value conflicts in Cameroon.
abstract: Sickle cell disease (SCD) is a debilitating illness that affects the life expectancy of patients. It is possible to test for SCD before birth, to allow for reproductive options to parents. However, under Cameroonian Law, voluntary abortion is a criminal offense and medical abortion is permitted only "…if it is done by an authorized professional and justified by the need to save the mother from grave health jeopardy." The objective of the present study was to compare the views of Cameroonian doctors, parents with at least one living SCD-affected child, and adult SCD patients, regarding prenatal genetic diagnosis and termination of SCD-affected pregnancy. We conducted a quantitative sociological survey of 110 doctors, 130 parents, and 89 adult patients. The majority accepted the prenatal genetic diagnosis for SCD (78.7%, 89.8%, and 89.2%, respectively). Parents (62.5%) were more in favor of termination of SCD-affected pregnancy, than doctors and adults patients (36.1% and 40.9% acceptance, respectively). Parents and patients who found medical abortion acceptable cited fear to have a SCD-affected child (98.1 and 88.9%) and the poor quality of the affected child's health (92.6% and 81.5%). The data underscore the urgency of policy action to place emphasis on: premarital screening, early detection and care of SCD, socio-economic measures to assist SCD-affected families, appropriateness to consider maternal distress due to fetal anomalies in medical abortion legislation. These novel findings signal potential value-based conflicts on the horizon, and can usefully inform the future policy actions in the African continent as OMICS biotechnologies are increasingly employed in global health. To the best of our knowledge, the present study is the first attempt in sub-Saharan Africa to attempt to triangulate the views of multiple stakeholders towards prenatal diagnosis of SCD and termination of an affected pregnancy.
authors.affiliation: 1 Division of Human Genetics, Faculty of Health Sciences, University of Cape Town , Cape Town, South Africa .
authors.forename: Ambroise
authors.initials: A
authors.lastname: Wonkam
authors.forename: Samia
authors.initials: S
authors.lastname: Hurst
mesh_terms: D000328:Adult; D000755:Anemia, Sickle Cell / Q000175:diagnosis* / Q000453:epidemiology*; D001291:Attitude of Health Personnel; D002163:Cameroon / Q000453:epidemiology; D005260:Female; D005820:Genetic Testing; D019538:Health Care Surveys; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D057766:Policy; D011247:Pregnancy; D011250:Pregnancy Complications, Hematologic / Q000175:diagnosis* / Q000453:epidemiology*; D011296:Prenatal Diagnosis; D012307:Risk Factors; D011795:Surveys and Questionnaires; D055815:Young Adult
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