Skip to main content

Carrier screening for beta-thalassemia in the Maldives: perceptions of parents of affected children who did not take part in screening and its consequences


The Republic of Maldives (Maldives) is an island nation in the Indian Ocean with a population of 344, 023. Studies show that Maldives has one of the world’s highest thalassemia carrier rates. It is estimated that 16–18 % of the Maldivians are β-thalassemia carriers, and approximately 28 new β-thal cases are recorded annually. Poor uptake of screening for the condition is one of the main reasons for this high number of new cases. The aim of this study was to explore the reasons for not testing for thalassemia in Maldives before or after marriage. Findings show that participants did not undergo carrier tests because of poor awareness and not fully knowing the devastating consequences of the condition. The outcomes of not testing were distressing for most participants. Religion played a vital role in all the decisions made by the participants before and after the birth of a β-thal child.

This is a preview of subscription content, access via your institution.

Fig. 1


  • Ahmed S, Bekker H, Hewison J, Kinsey S (2002) Thalassaemia carrier testing in Pakistani adults: behaviour, knowledge and attitudes. Public Health Genomics 5:120–127. doi:10.1159/000065167

    Google Scholar 

  • Al Hamdan NA, Al Mazrou YY, Al Swaidi FM, Choudhry AJ (2007) Premarital screening for thalassemia and sickle cell disease in Saudi Arabia. Genet Med 9:372–377. doi:10.1097/GIM.0b013e318065a9e8

    Article  Google Scholar 

  • Al-Farsi OA, Al-Farsi YM, Gupta I, Ouhtit A, Al-Farsi KS, Al-Adawi S (2014) A study on knowledge, attitude, and practice towards premarital carrier screening among adults attending primary healthcare centers in a region in Oman. BMC Public Health 14:1–16. doi:10.1186/1471-2458-14-380

    Article  Google Scholar 

  • Angastiniotis M (2014) The Maldives: WHO Mission August 2014. Thalassaemia International Federation, Nicosia

    Google Scholar 

  • Birgens H, Ljung R (2007) The thalassaemia syndromes. Scand J Clin Lab Invest 67:11–26. doi:10.1080/00365510601046417

    Article  CAS  PubMed  Google Scholar 

  • Bozkurt G (2007) Results from the North Cyprus thalassemia prevention program. Hemoglobin 31:257–264. doi:10.1080/03630260701297204

    Article  CAS  PubMed  Google Scholar 

  • Braun V, Clarke V (2006) Using thematic analysis in psychology. Qual Res Psychol 3:77–101. doi:10.1191/1478088706qp063oa

    Article  Google Scholar 

  • Caelli K, Ray L, Mill J (2003) ‘Clear as mud’: toward greater clarity in generic qualitative research. Int J Qual Methods 2:1–13

    Google Scholar 

  • Canatan D, Ratip S, Kaptan S, Cosan R (2003) Psychosocial burden of beta-thalassaemia major in Antalya, south Turkey. Soc Sci Med 56:815–819. doi:10.1016/S0277-9536(02)00080-1

    Article  PubMed  Google Scholar 

  • Champion LV, Skinner SC (2008) The health belief model. In: Glanz K, Rimer BK, Viswanath K (eds) Health behavior and health education: theory, research, and practice. Jossey-Base: A Wiley Inprint, San Francisco

  • Chiruka S, Darbyshire P (2011) Management of thalassaemia. Paediatr Child Health 21:353–356. doi:10.1016/j.paed.2011.02.012

    Article  Google Scholar 

  • Fahad M, Alswaidi ZA, Memish SJ, O’Brien NA, Al-Hamdan FM, Al-Enzy OAA, Al-Wadey AM (2012) At-risk marriages after compulsory premarital testing and counseling for β-thalassemia and sickle cell disease in Saudi Arabia, 2005–2006. J Genet Couns 21(2):243–255. doi:10.1007/s10897-011-9395-4

    Article  Google Scholar 

  • Firdous N (2005) Prevention of thalassaemia and haemoglobinopathies in remote and isolated communities—the Maldives experience. Ann Hum Biol 32:131–137. doi:10.1080/03014460500074996

    Article  PubMed  Google Scholar 

  • Firdous N, Gibbons S, Modell B (2011) Falling prevelance of beta-thalassaemia and eradication of malaria in the Maldives. J Community Genet 2:173–189. doi:10.1007/s12687-011-0054-0

    Article  PubMed  PubMed Central  Google Scholar 

  • Garewal G, Das R, Jaur J, Marwaha RK, Gupta I (2005) Establishment of prenatal diagnosis for ß-thalassaemia: a step towards its control in a developing country. Ann Hum Biol 32:138–144

    Article  CAS  PubMed  Google Scholar 

  • Habibzadeh F, Yadollahie M, Roshanipoor M, Haghshenas M (2012) Reproductive behaviour of mothers of children with beta-thalassaemia major. East Mediterr Health J 18:246–249

    CAS  PubMed  Google Scholar 

  • Karimi M, Jamalian N, Yarmohammadi H, Askarnejad A, Afrasiabi A, Hashemi A (2007) Premarital screening for β-thalassaemia in Southern Iran: options for improving the programme. J Med Screen 14:62–66. doi:10.1258/096914107781261882

    Article  PubMed  Google Scholar 

  • Kvale S (2007) Doing interviews. SAGE Publications, Ltd, London. doi:10.4135/9781849208963

    Book  Google Scholar 

  • Memish ZA, Saeedi MY (2011) Six-year outcome of the national premarital screening and genetic counseling program for sickle cell disease and β-thalassemia in Saudi Arabia. Ann Saudi Med 31:229–235. doi:10.4103/0256-4947.81527

    Article  PubMed  PubMed Central  Google Scholar 

  • Merriam SB (2009) Qualitative research: a guide to design and implementation. Wiley, San Francisco

    Google Scholar 

  • Ministry of Health (2013) The Maldives health statistics 2013. Ministry of Health, Maldives

    Google Scholar 

  • Ministry of Legal Reform Information and Arts (2008) Functional translation of the Constitution of the Republic of Maldives 2008. President’s office, Maldives

    Google Scholar 

  • National Bureau of Statistics (2015) Maldives: population and housing Cencus 2014. Ministry of Finance & Treasory, Maldives

    Google Scholar 

  • Peoples’ Majlis (2012) Thalassaemia prevention law. President’s Office, Maldives

    Google Scholar 

  • Pijpe J, de Voogt A, van Oven M, Henneman P, van der Gaag KJ, Kayser M, de Knijff P (2013) Indian ocean crossroads: human genetic origin and population structure in the Maldives. Am J Phys Anthropol 151:58–67. doi:10.1002/ajpa.22256

    Article  PubMed  PubMed Central  Google Scholar 

  • Rozario S (2009) Allah is the scientist of the scientists: modern medicine and religious healing among British Bangladeshis. Cult Relig 10:177–199. doi:10.1080/14755610903077562

    Article  Google Scholar 

  • Saxena A, Phadke S (2002) Feasibility of thalassaemia control by extended family screening in Indian context. J Health Popul Nutr 20:31

    PubMed  Google Scholar 

  • Sharghi A, Karbakhsh M, Nabaei B, Meysamie A, Farrokhi A (2006) Depression in mothers of children with thalassemia or blood malignancies: a study from Iran. Clin Pract Epidemiol Ment Health 2:27

    Article  PubMed  PubMed Central  Google Scholar 

  • Shaw A, Hurst J (2008) “What is this genetics, anyway?” understandings of genetics, illness causality and inheritance among British Pakistani users of genetic services. J Genet Couns 17:373–383. doi:10.1007/s10897-008-9156-1

    Article  PubMed  Google Scholar 

  • Tarazi I, Al Najjar E, Lulu N, Sirdah M (2007) Obligatory premarital tests for β-thalassaemia in the Gaza strip: evaluation and recommendations. Int J Lab Hematol 29:111–118. doi:10.1111/j.1751-553X.2006.00836.x

    Article  CAS  PubMed  Google Scholar 

  • United Nations Children’s Fund (2014) The state of the world’s children report 2015 statistical tables. United Nations Children’s Fund (UNICEF), New York

    Google Scholar 

  • Verma IC, Saxena R, Kohli S (2011) Past, present & future scenario of thalassaemic care & control in India. Indian J Med Res 134:507–521

    CAS  PubMed  PubMed Central  Google Scholar 

  • Webster’s New World Medical Dictionary (2008) Thalassemia major. Credo Reference, Boston Accessed 15 Nov 2015

  • Widayanti CG, Ediati A, Tamam M, Faradz SMH, Sistermans EA, Plass AMC (2011) Feasibility of preconception screening for thalassaemia in Indonesia: exploring the opinion of Javanese mothers. Ethn Health 16:483–499. doi:10.1080/13557858.2011.564607

    Article  PubMed  Google Scholar 

  • World Health Organization (2003) WHO South East Asia advisory committee on health research: report to the regional director. World Health Organization: Regional Office for South-East Asia, New Delhi

    Google Scholar 

  • World Health Organization (2010) Social disparities in health in the Maldives: an assessment and implications. World Health Organization: Regional Office for South-East Asia, India

    Google Scholar 

  • World Health Organization (2015) World health statistics 2015. World Health Organization, Luxembourg

    Google Scholar 

  • Zeinalian M, Nobari R, Moafi A, Salehi M, Hashemzadeh-Chaleshtori M (2013) Two decades of pre-marital screening for beta-thalassemia in central Iran. J Community Genet 4:517–522. doi:10.1007/s12687-013-0142-4

    Article  PubMed  PubMed Central  Google Scholar 

Download references


We would like to thank all the participants who took part in this study and all the staff of Maldives Blood Services for all the help they provided during this study.

Author information

Authors and Affiliations


Corresponding author

Correspondence to Fazeela Waheed.

Ethics declarations

This study was approved by the ethics committee of the University of Western Australia (Ref: RA/4/1/5626) in accordance with the requirements of the National Statement on Ethical Conduct in Human Research (National Statement) and the policies and procedures of The University of Western Australia. In Addition, the study was approved by the National Health Research Committee of Maldives on the seventh of February, 2013. All procedures of this study were carried out in accordance to the laws and regulations of Australia and Maldives. All participants provided written consent prior to study.

Conflict of interest

The authors declare that they have no conflict of interest.

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Waheed, F., Fisher, C., Awofeso, A. et al. Carrier screening for beta-thalassemia in the Maldives: perceptions of parents of affected children who did not take part in screening and its consequences. J Community Genet 7, 243–253 (2016).

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI:


  • Maldives
  • Thalassemia
  • Premarital testing
  • Genetic screening