Abstract
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.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Ahmed S, Saleem M, Sultana N, Raashid Y, Waqar A, Anwar M, Modell B, Karamat KA, Petrou M (2000) Prenatal diagnosis of beta-thalassemia in Pakistan: experience in a Muslim country. Prenat Diagn 20(5):378–383
Ahmed S, Green JM, Hewison J (2006) Attitudes towards prenatal diagnosis and termination of pregnancy for thalassemia in pregnant Pakistani women in the North of England. Prenat Diagn 26:248–257
Ainoon O, Cheong SK (1994) Thalassemia in Malaysia: a strategy for prevention. Malays J Pathol 16(1):23–27
Alkuraya FS, Kilani RA (2001) Attitude of Saudi families affected with hemoglobinopathies towards prenatal screening and abortion and the influence of religious ruling (Fatwa). Prenat Diagn 21(6):448–451
Borgna-Pignatti C, Galanello R (2009) Thalassemias and related disorders: quantitative disorders of hemoglobin synthesis. In: Greer JP (ed) Wintrobe’s clinical hematology, 12th edn. Williams and Wilkins, Philadelphia, pp 1083–1131
Cao A, Rosatelli MC, Galanello R (1998) Prevention and control of haemoglobinopathies. Ann Nestle 56(2):73–81
Christianson A, Streetly A, Darr A (2004) Lessons from thalassemia screening in Iran. BMJ 329:1115–1117
Department of Statistics Malaysia (2010) Social statistics bulletin Malaysia http://www.statistics.gov.my/portal/download_Population/files/census2010/Taburan_Penduduk_dan_Ciri-ciri_Asas_Demografi.pdf. Accessed 5 April 2012
El-Beshlawy A, El-Shekha A, Momtaz M, Said F, Hamdy M, Osman O, Meshaal S, Gafaar T, Petrou M (2012) Prenatal diagnosis for thalassaemia in Egypt: what changed parents’ attitude? Prenat Diagn 32:777–782
George E (1998) Thalassemia: a public health problem in Malaysia. In: George E (ed) Thalassemia carrier diagnosis in Malaysia. SP-Muda Printing Sdn Bhd, Kuala Lumpur, pp 1–6
George E (2001) Beta-thalassemia major in Malaysia, an ongoing public health problem. Med J Malays 56(4):397–400
Gilani AI, Jadoon AS, Qaiser R (2007) Attitudes towards genetic diagnosis in Pakistan: a survey of medical and legal communities and parents of thalassemic children. Community Genet 10:140–146
Karimi M, Jamalian N, Yarmohammadi H, Askarnejad A, Afrasiabi A, Hashemi A (2007) Premarital screening for beta-thalassemia in Southern Iran: options for improving the programme. J Med Screen 14(2):62–66
Karimi M, Johari S, Cohan N (2010) Attitude toward prenatal diagnosis for beta-thalassemia major and medical abortion in Southern Iran. Hemoglobin 34(1):49–54
Kuliev A (1986) Thalassemia can be prevented. World Health Forum 7:286–290
Samavat A, Modell B (2004) Iranian national thalassemia screening programme. BMJ 329:1134–1137
Tan JA, Lee PC, Wee YC, Tan KL, Mahali NF, George E, Chua KH (2010) High prevalence of alpha- and beta-thalassemia in the Kadazandusuns in east Malaysia: challenges in providing effective health care for an indigenous group. J Biomed Biotechnol. doi:10.1155/2010/706872
Teh AKH, Chan LL (2008) Fifth report of the national transplant registry 2008 http://www.mst.org.my/ntrSite/donwload/report2008/Chapter%201_BMT_2008.pdf. Accessed 25 April 2012
Weatherall DJ, Clegg JB (2001) Inherited hemoglobin disorders: an increasing global health problem. Bull World Health Organ 79:704–711
Wong LP, George E, Tan JA (2011) Public perceptions and attitudes toward thalassemia: influencing factors in a multi-racial population. BMC Publ Health 11:193
Zahed L, Bou-dames J (1997) Acceptance of first-trimester prenatal diagnosis for the haemoglobinopathies in Lebanon. Prenat Diagn 17(5):423–428
Conflict of interest
The authors declare that they have no conflict of interest.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Ngim, C.F., Lai, N.M., Ibrahim, H. et al. Attitudes towards prenatal diagnosis and abortion in a multi-ethnic country: a survey among parents of children with thalassaemia major in Malaysia. J Community Genet 4, 215–221 (2013). https://doi.org/10.1007/s12687-012-0133-x
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s12687-012-0133-x