Genetic Counseling for Fetal Abnormalities in a South African Community
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ORIGINAL RESEARCH
Genetic Counseling for Fetal Abnormalities in a South African Community Caryn Todd & Tabitha Haw & Jennifer Kromberg & Arnold Christianson
Received: 27 August 2009 / Accepted: 12 January 2010 / Published online: 5 February 2010 # National Society of Genetic Counselors, Inc. 2010
Abstract Fetal abnormalities are congenital abnormalities identified prenatally. Women who have a fetal abnormality detected often have to make difficult decisions regarding continuation or termination of the pregnancy. The aims of this research project were: to investigate some of the factors that influenced the decision to terminate a pregnancy in which fetal abnormalities were diagnosed; and to determine the implications for genetic counseling practice in South Africa. The study was retrospective and file-based. A total of 171 women counseled for fetal abnormalities, between 2002 and 2006, were identified and relevant data were collected from their records. Altogether 116/170 (68.2%) women were offered termination of pregnancy, and 73/113 (65%) requested the procedure. Early gestation, gestation at the time termination was offered, and ethnicity of the patient, were significantly associated with a termination request. Black patients were less likely to request termination, but more likely to receive a late diagnosis than other patients. Genetic counselors need to adopt an advocacy and educational role to improve this situation. Furthermore, a better understanding of the cultural and ethnicity-related issues is required. Keywords Genetic counseling . Fetal abnormalities . Termination of pregnancy . South Africa
C. Todd : T. Haw (*) : J. Kromberg : A. Christianson Human Genetics Division, University of the Witwatersrand and National Health Laboratory Service, PO Box 1038, Johannesburg, South Africa, 2000 e-mail: [email protected]
Introduction During the past three decades significant advances have been made in the detection of fetal abnormalities. These advances have been made possible by fetal ultrasonography and genetic testing of fetal cells, obtained through various invasive procedures (Grandjean et al. 1999). Fetal abnormalities are defined as congenital abnormalities that are identified in a fetus prenatally; they may be structural or functional in nature (Sanders et al. 2002). After the detection of a fetal abnormality women and their partners face emotionally difficult decisions which include whether to interrupt or continue a pregnancy. Genetic counseling, involving the provision of detailed information and psychosocial support should be provided for these couples to assist them in decision-making and coping with their situation (Rauch et al. 2005). The decision regarding termination of a pregnancy in which fetal abnormalities have been identified, is complex and has been shown to be dependent on many factors. These include maternal age, reproductive history, religious and cultural beliefs, individual attitudes towards termination of pregnancy, visualization of the abnormalities on ultrasound, the certain
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