Background: Preconception carrier screening for hemoglobinopathies (HbPs) is debated in the Netherlands. Objectives: Intentions to participate in preconception carrier screening for HbPs as well as informed reproductive options were assessed in 109 Turkish female immigrants. Method: Participants completed a structured questionnaire. Results: 83.5% of 109 Turkish female immigrants intended to participate in preconception carrier screening. Intention to participate was related to the desire to reduce uncertainty about having offspring affected by HbPs, but not with socio-demographic variables, risk-estimation and worrying. If the tests concerning carrier status for HbPs were confirmative for both partners, 36.3% (n = 33) of the women with the intention of preconception carrier screening would refrain from getting children of their own, including 14.3% (n = 13) opting for adoption, 37.4% (n = 34) would decide to become pregnant and to opt for prenatal testing on HbPs. Finally, among 37.4% of the women opting for prenatal testing, 30.3% (n = 10) would terminate an affected pregnancy, 18.2% (n = 6) not and 51.5% (n = 17) could not decide (1 missing value). Conclusion: A large majority of Turkish female immigrants would participate in preconception carrier screening for HbPs.

Keywords:
Hemoglobinopathies, Preconception carrier screening, The Netherlands, Turkish female immigrants
1.
Alswaidi FM, O’Brien SJ: Premarital screening programmes for haemoglobinopathies, HIV and hepatitis viruses: review and factors affecting their success. J Med Screen 2009;16:22–28.
2.
Patrinos GP, Grosveld FG: Pharmacogenomics and therapeutics of hemoglobinopathies. Hemoglobin 2008;32:229–236.
3.
Watson J: DNA. The Secret of Life. London, William Heinemann, 2003.
4.
Modell B, Darlison M, Birgens H, Cario H, Faustino P, Giordano PC, Gulbis B, Hopmeier P, Lena-Russo D, Romao L, Theodorsson E: Epidemiology of haemoglobin disorders in Europe: an overview. Scand J Clin Lab Invest 2007;67:39–70.
5.
Giordano PC, Harteveld CL: Prevention of hereditary hemoglobinopathies in the Netherlands. Ned Tijdschr Geneeskd 2006;150:2137–2141 [Dutch].
6.
Heijboer H, van den Tweel XW, Peters M, Knuist M, Prins J, Heymans HS: One year of neonatal screening for sickle-cell disease in Emma Children’s Hospital/Academic Medical Center Amsterdam. Ned Tijdschr Geneeskd 2001;145:1795–1799 [Dutch].
7.
Giordano PC: Hemoglobinopathieën in Nederland. Diagnostiek, epidemiologie en preventie (Hemoglobinopathies in the Netherlands. Diagnostics, epidemiology and prevention). Ridderkerk, Ridderprint, 1999 [Dutch].
8.
Streetly A: in Kmietowicz Z (ed): Sickle cell screening makes genetic counselling everybody’s business. BMJ 2006;332:570.
9.
Lakeman P, Plass AM, Henneman L, Bezemer PD, Cornel MC, Ten Kate LP: Three-month follow-up of Western and non- Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands. Genet Med 2008;10:820–830.
10.
Lakeman P, Plass AM, Henneman L, Bezemer PD, Cornel MC, Ten Kate LP: Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation? Eur J Hum Genet 2009;17:999–1009.
11.
Modell B, Kuliev AM: Services for thalassaemia as a model for cost-benefit analysis of genetic services. J Inherit Metab Dis 1991;14:640–651.
12.
Angastiniotis M: Worldwide status of thalassaemia-impact and potential approaches (abstract book). The 8th international conference on thalassaemia and the hemoglobinopathies and the 10th Thalassaemia parent and Thalassaemics International Federation Conference (TIF). Athens, ERA, October 2001, pp 14–15.
13.
Bain BJ: Neonatal/newborn haemoglobinopathy screening in Europe and Africa. J Clin Pathol 2009;62:53–56.
14.
Markel H: The stigma of disease: implications of genetic screening. Am J Med 1992;93:209–215.
15.
Health Council of the Netherlands: Preconception care: a good beginning. The Hague: Health Council of the Netherlands, 2007; publication no. 2007/19.
16.
Ahmad WI, Bradby H: Locating ethnicity and health: exploring concepts and contexts. Sociol Health Ill 2007;29:795–810.
17.
Sirdah M, BiltoYY, El Jabour S, Najjar KH: Screening secondary school students in the Gaza strip for beta-thalassaemia trait. Clin Lab Haematol 1998;20:279–283.
18.
Modell B, Darr A: Genetic counselling and customary consanguineous marriage. Nat Rev 2002;3:225–229.
19.
Jaber L, Halpern GJ, Shohat M: The impact of consanguinity worldwide. Community Genet 1998;1:12–17.
20.
Talan D, van Elderen T, Hoogenboom J: Ongelijk verdeeld. Migranten vragen minder én ander klinisch genetisch advies. Medisch Contact 2004;59:1828–1829.
21.
Mutlu D: What motivation do Turkish women have to participate in preconception carrier testing for HbPs?; thesis, Leiden University, Leiden, www.bibliotheek.leidenuniv.nl, 2005 [Dutch].
22.
Atkin K, Ahmad WI, Anionwu EN: Screening and counselling for sickle cell disorders and thalassaemia: the experience of parents and health professionals. Soc Sci Med 1998;47:1639–1651.
23.
Ahmad WI, Atkin K: Ethnicity and caring for a disabled child: the case of children with sickle cell or thalassaemia. Br J Soc Work 1996;26:755–775.
24.
Braithwaite D, Sutton S, Steggles N: Intention to participate in predictive genetic testing for hereditary cancer: the role of attitude toward uncertainty. Psychol Health 2002;17:761–772.
25.
National Genetic Information Centre (Erfocentrum): Voordat u aan kinderen denkt ...Informatie over erfelijkheidsvoorlichting (Before thinking about having children ... genetic counseling). Soestdijk, Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP) (Dutch Genetic Alliance, VSOP), 1994. vsop@vsop.nl,http://www.vsop.nl.
26.
Vereniging Samenwerkende Ouder- en Patiëntenorganisaties (VSOP) (Dutch Genetic Alliance, VSOP): Erfelijke bloedarmoede (Inherited hemoglobin disorder). Soestdijk, VSOP, 2001. vsop@vsop.nl; http://www.vsop.nl.
27.
Steggles AN: Psychological aspects of genetic testing for cancer; unpublished thesis, University of London, London, 2001.
28.
Yumuk PF, Gumus M, Ekenel M, Basaran G, Aliustaoglu M, Topal A, Turhal NS: Attitude toward genetic testing for cancer risk in Istanbul. Genet Test 2004;8:169–173.
29.
Giordano PC, Dihal AA, Harteveld CL: Estimating the attitude of immigrants toward primary prevention of the hemoglobinopathies. Prenat Diagn 2005;25:885–893.
30.
Ajzen I: Attitudes, Personality and Behavior. Milton Keynes, Open University Press, 1988.
31.
Stichting Erfocentrum (National Genetic Information Centre), GG & GD (Municipal Mental Health Centre) Amsterdam. 2005. http://www.erfelijkheid.nl/migranten/voorlichtingsbijeenkomsten, info@sikkelcel.nl.
32.
Stichting Erfocentrum (National Genetic Information Centre), Erasmus Medical Centre Rotterdam. 2006. http://www.zwangerwijzer.nl.
© 2010 S. Karger AG, Basel
2010
Copyright / Drug Dosage / Disclaimer
Copyright: All rights reserved. No part of this publication may be translated into other languages, reproduced or utilized in any form or by any means, electronic or mechanical, including photocopying, recording, microcopying, or by any information storage and retrieval system, without permission in writing from the publisher.
Drug Dosage: The authors and the publisher have exerted every effort to ensure that drug selection and dosage set forth in this text are in accord with current recommendations and practice at the time of publication. However, in view of ongoing research, changes in government regulations, and the constant flow of information relating to drug therapy and drug reactions, the reader is urged to check the package insert for each drug for any changes in indications and dosage and for added warnings and precautions. This is particularly important when the recommended agent is a new and/or infrequently employed drug.
Disclaimer: The statements, opinions and data contained in this publication are solely those of the individual authors and contributors and not of the publishers and the editor(s). The appearance of advertisements or/and product references in the publication is not a warranty, endorsement, or approval of the products or services advertised or of their effectiveness, quality or safety. The publisher and the editor(s) disclaim responsibility for any injury to persons or property resulting from any ideas, methods, instructions or products referred to in the content or advertisements.
You do not currently have access to this content.