Attitudes towards prenatal diagnosis and abortion in a multi-ethnic country: a survey among parents of children with thalassaemia major in Malaysia

Abstract

Thalassaemia is a public health problem in multiethnic Malaysia which mainly affects the Malays, KadazanDusuns 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.

Attitudes of Saudi parents with a deaf child towards prenatal diagnosis and termination of pregnancy

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Determinants of Blood Donation Status in Malaysia: Profiling the Non-Donors, Occasional Donors and Regular Donors

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Autism spectrum disorders: a qualitative study of attitudes toward prenatal genetic testing and termination decisions of affected pregnancies

“…Studies on genetic diseases, such as fragile X syndrome, Down syndrome and cystic fibrosis, suggest that parents with affected children have various attitudes toward PGT and continuation/termination of affected pregnancies (24)(25)(26)(27)(28)(29)(30). Many factors are associated with parents' decision-making, including, but not limited to, religion, disease severity, testing procedures, psychological conditions, family-related factors, gestation period while undergoing the test, and previous experience with the disease (26)(27)(28)(29)(31)(32)(33).…”