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Title: Carrier screening for beta-thalassemia in the Maldives: perceptions of parents of affected children who did not take part in screening and its consequences
Contributor(s): Waheed, Fazeela (author); Fisher, Colleen (author); Awofeso, AwoNiyi (author); Stanley, David  (author)orcid 
Publication Date: 2016
Open Access: Yes
DOI: 10.1007/s12687-016-0273-5Open Access Link
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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 ß-thalassemia carriers, and approximately 28 new ß-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 ß-thal child.
Publication Type: Journal Article
Source of Publication: Journal of Community Genetics, 7(3), p. 243-253
Publisher: Springer
Place of Publication: Germany
ISSN: 1868-310X
Field of Research (FOR): 119999 Medical and Health Sciences not elsewhere classified
Socio-Economic Objective (SEO): 929999 Health not elsewhere classified
Peer Reviewed: Yes
HERDC Category Description: C1 Refereed Article in a Scholarly Journal
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