Widayanti, C.G., Ediati, A., Tamam, M., Faradz, S.M.H., Sistermans, E.A., Plass, A.M.C. Feasibility of preconception screening for thalassaemia in Indonesia: exploring the opinion of Javanese mothers. Ethnicity & Health: 2011, 16(4-5), 483-499 This is a NIVEL certified Post Print, more info at http://www.nivel.eu Postprint Version 1.0 Journal website http://www.tandfonline.com/doi/abs/10.1080/13557858.2011.564607 Pubmed link http://www.ncbi.nlm.nih.gov/pubmed/21797731 DOI 10.1080/13557858.2011.564607 This is a NIVEL certified Post Print, more info at http://www.nivel.eu Feasibility of preconception screening for thalassaemia in Indonesia: exploring the opinion of Javanese mothers COSTRIE GANES WIDAYANTI AB , ANNASTASIA EDIATI BC , MOEDRIK TAMAM D , SULTANA M.H. FARADZ C , ERIK A. SISTERMANS E & ANNE MARIE C. PLASS EF* a Biomedical Postgraduate Program on Genetic Counseling, Faculty of Medicine, Diponegoro University, Semarang, Indonesia; b Faculty of Psychology, Diponegoro University, Semarang, Indonesia; c Centre for Biomedical Research (CEBIOR), Faculty of Medicine, Diponegoro University, Semarang, Indonesia; d Department of Paediatrics, Faculty of Medicine, Diponegoro University/Dr. Kariadi Hospital, Semarang, Indonesia; e Department of Clinical Genetics, VU University Medical Center, Amsterdam, The Netherlands; f EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands ABSTRACT Background. Thalassaemia has become a major public health issue in Indonesia. It has been estimated that up to 10% of the population carries a gene associated with beta-thalassaemia. Currently, there is no formal recommendation for thalassaemia screening. This study aimed to explore awareness of thalassaemia, and to explore attitudes regarding carrier testing among Javanese mothers. Methods. A quantitative questionnaire, designed using constructs of the Theory of Planned Behaviour, was applied cross-sectionally. Results. Out of 191 mothers who were invited, 180 agreed to participate (RR = 94%), of whom 74 had a child affected with thalassaemia. Both attitudes towards receiving information about thalassaemia, and attitudes towards carrier testing were very positive. Awareness of thalassaemia was poor. Mothers, both those with and without an affected child, had barely heard of thalassaemia, nor of carrier testing. However, all mothers, including those with an affected child expressed high levels of interest in carrier testing. Respondents did not perceive that they had any control over carrier testing, and feared stigmatization and being discriminated against if their carrier status was identified. Attitudes