title: Would you terminate a pregnancy affected by sickle cell disease? Analysis of views of patients in Cameroon.
abstract: Sickle cell disease (SCD) is a debilitating illness that affects quality of life and life expectancy for patients. In Cameroon, it is now possible to opt for termination of an affected pregnancy (TAP) where the fetus is found to be affected by SCD. Our earlier studies found that, contrary to the views of Cameroonian physicians, a majority of parents with their children suffering from SCD would choose to abort if the fetuses were found to be affected. What have not yet been investigated are the views of people suffering from/living with SCD. We used a quantitative sociological method, with administered structured questionnaires, to study the attitudes of adult patients suffering from SCD on prenatal genetic diagnosis (PND) and possible TAP. The majority of the 89 participants were urban dwellers (84.3%), women (57.3%), Christian (95.5%) and single (90.9%), with a secondary/tertiary education (79.5%). The majority (89.2%) would consider PND for SCD; almost half (48.5%) would reject TAP while 40.9% would consider it. Respondents who rejected TAP claimed mostly ethical reasons (78.1%) while those who found TAP acceptable cited fear of having an affected child (88.9%) and the poor quality of the affected child's health (81.5%). Cameroonian patients with SCD are generally supportive of PND and a remarkably high number of patients living with SCD reported that they would consider terminating a pregnancy based on their assessment of the future well-being of the child. Research is required to investigate the burden of SCD on families and their quality of life.
authors.affiliation: Division of Human Genetics, Faculty of Health Sciences, University of Cape Town (UCT), Cape Town, South Africa Department of Medicine, University of Cape Town (UCT), Cape Town, South Africa.
authors.forename: Ambroise
authors.initials: A
authors.lastname: Wonkam
authors.affiliation: Department of Medicine, University of Cape Town (UCT), Cape Town, South Africa.
authors.forename: Jantina
authors.initials: J
authors.lastname: de Vries
authors.affiliation: Institute for Genome Sciences & Policy, Duke University, Durham, North Carolina, USA.
authors.forename: Charmaine D
authors.initials: CD
authors.lastname: Royal
authors.affiliation: Division of Human Genetics, Faculty of Health Sciences, University of Cape Town (UCT), Cape Town, South Africa.
authors.forename: Raj
authors.initials: R
authors.lastname: Ramesar
authors.affiliation: Faculty of Medicine and Biomedical Sciences, University of Yaoundé I, Yaoundé, Cameroon.
authors.forename: Fru F
authors.initials: FF
authors.lastname: Angwafo
mesh_terms: D000028:Abortion, Induced / Q000941:ethics*; D000328:Adult; D000755:Anemia, Sickle Cell / Q000175:diagnosis / Q000235:genetics / Q000523:psychology; D002163:Cameroon; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology; D011247:Pregnancy; D011788:Quality of Life; D012307:Risk Factors; D011795:Surveys and Questionnaires
keywords: Abortion; Abortion Counselling; Clinical Ethics; Genetic Counselling/Prenatal Diagnosis; Genetic Screening/Testing