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Background Thalassaemia is a genetic illness that is prevalent in the occupied Palestinian territory (oPt), and about 4% of the population have the affected gene. People with thalassaemia have hormonal disturbances, delayed growth, and other complications that can lead to financial and social problems for families. We identified the factors that contributed to a family's decision to abort or not abort a fetus affected by β thalassaemia in the West Bank, oPt. Methods From 2001, the Thalassemia Patients' Friends Society (TPFS) and the Ministry of Health (MoH), both in the West Bank, identified pregnant women who previously had a baby with β-thalassaemia major and therefore might be at risk of having another baby with this disorder. In the oPt, before marriage, couples are required by law to have a thalassaemia screening test—records are available from TPFS and MoH—and if the man and woman are diagnosed as having the trait for the disease they are advised to not get married. However, if they choose to get married, they are warned and given counselling about the possibility of having children with thalassaemia. From January to March, 2011, convenient sampling was used to select 32 women (72 fetuses) in the West Bank who had prenatal screening tests between 2000–11. Two medical students with training in research methods and data gathering interviewed these women after the pregnancy in private settings with a questionnaire that included items about prenatal testing, test results, pregnancy outcome (abortion or birth), and factors affecting a family's decision of whether to terminate the pregnancy. Quantitative data were analysed with SPSS (version 17.0) and qualitative data were analysed manually. The institutional review board at An-Najah National University, West Bank, provided approval to do the study. Women provided written informed consent. Findings The results of prenatal screening showed that 16 (22%) of 72 fetuses were not carriers of the β-thalassaemia major gene, 36 (50%) were carriers, and 20 (28%) were affected. 17 (85%) of 20 affected fetuses were aborted and three (15%) were not. Two of three families did not have the pregnancy terminated because of their religious beliefs, and the third family did not terminate the pregnancy because they wanted to have a child. 12 (71%) of 17 fetuses were aborted because the families did not want a child with β thalassaemia since they had affected family members, and five (29%) because of disease awareness programmes. A mother's higher education was significantly associated with the choice to abort (five [42%] of 12 mothers with a bachelor's degree did not have an abortion compared with seven [58%] with a high-school education; p Interpretation Prevention of new cases of β thalassaemia might be difficult because of some couples' religious views about abortion. We therefore recommend that prominent Palestinian religious authorities agree on a ruling about abortion with respect to fetuses affected by β thalassaemia. Improvement of women's education might reduce the incidence of β thalassaemia. Programmes to raise awareness about β thalassaemia and its complications are needed to reduce the number of new cases of the disease in the oPt. Funding TPFS. |
