Ngim Chin Fang, Lai Nai Ming, Ibrahim Hishamshah, Ratnasingam Vanassa
Department of Paediatrics, Jeffrey Cheah School of Medicine and Health Sciences, Monash University Sunway Campus, Johor Bahru, Malaysia,
J Community Genet. 2013 Apr;4(2):215-21. doi: 10.1007/s12687-012-0133-x. Epub 2013 Jan 8.
Thalassaemia is a public health problem in multi-ethnic Malaysia which mainly affects the Malays, Kadazan-Dusuns and Chinese. This study, the first in Malaysia, aims to evaluate the acceptability of prenatal diagnosis and abortion among Malaysian parents who have a child or children with thalassaemia major and the socio-demographic factors affecting their decision-making. A pre-structured questionnaire was distributed to parents of children with thalassaemia major. Response rate for completed surveys was 99.1 %. Out of 116 respondents, the majority (83/71.6 %) were agreeable for prenatal diagnosis, but only 33 (28.4 %) agreed to both prenatal diagnosis followed by termination of affected foetuses. Of parents who declined abortion, 77.6 % cited religious restriction as the main reason, and their religious background was a significant factor (p = 0.001), with 73.4 % of Muslim participants against termination compared to 25 % of Christians and 13.3 % of Buddhists. Gender, age, highest education level and number of children affected with thalassaemia were non-significant predictors in decision-making regarding abortion. The acceptance rate for termination of foetuses with thalassaemia major in Malaysia is low especially among the Muslims due to religious non-permissibility. Therefore, scholarly deliberations among the Malaysian Muslim religious authorities that result in a supportive stance in this issue may contribute to a more successful prevention programme.
地中海贫血是一个在多民族的马来西亚存在的公共卫生问题,主要影响马来人、卡达山-杜顺人以及华人。本研究是马来西亚的首个此类研究,旨在评估对于已有重型地中海贫血患儿的马来西亚父母而言,产前诊断和堕胎的可接受性以及影响他们决策的社会人口学因素。向重型地中海贫血患儿的父母发放了一份预先设计好的问卷。完整调查问卷的回复率为99.1%。在116名受访者中,大多数(83/71.6%)同意进行产前诊断,但只有33人(28.4%)既同意产前诊断又同意在确诊胎儿患病后终止妊娠。在拒绝堕胎的父母中,77.6%将宗教限制作为主要原因,且他们的宗教背景是一个显著因素(p = 0.001),73.4%的穆斯林参与者反对终止妊娠,相比之下,基督教徒中有25%反对,佛教徒中有13.3%反对。性别、年龄、最高教育水平以及患重型地中海贫血的子女数量在堕胎决策中并非显著的预测因素。在马来西亚,因宗教不允许,尤其是在穆斯林中,对于重型地中海贫血胎儿终止妊娠的接受率较低。因此,马来西亚穆斯林宗教当局之间进行学术商讨并在这个问题上形成支持性立场,可能有助于一个更成功的预防计划。