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

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Abstract

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.

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Acknowledgments

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.

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Authors and Affiliations

  1. School of Population Health, University of Western Australia, Perth, Australia

    Fazeela Waheed & Colleen Fisher

  2. School of Health and Environmental Studies, Hamdan Bin Mohammed Smart University, Dubai, United Arab Emirates

    AwoNiyi Awofeso

  3. School of Nursing, Midwifery and Indigenous Health, Charles Sturt University, Bathurst, Australia

    David Stanley

Authors
  1. Fazeela Waheed
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  2. Colleen Fisher
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  3. AwoNiyi Awofeso
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  4. David Stanley
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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.

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The authors declare that they have no conflict of interest.

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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). https://doi.org/10.1007/s12687-016-0273-5

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  • DOI: https://doi.org/10.1007/s12687-016-0273-5

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