Attitudes of general practitioners and midwives towards ethnicity-based haemoglobinopathy-carrier screening

European Journal of Human Genetics

Volumn 20, Issue 11, 2012, Pages 1112-1117

  Jans, Suze M P J ^a,b   De Jonge, Ank ^a   Henneman, Lidewij ^a   Cornel, Martina C ^a   Lagro Janssen, Antoinette L M ^b  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

^b RADBOUD UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

attitude; carrier screening; ethnicity; haemoglobinopathies; primary care; Theory of Planned Behaviour

Indexed keywords

ARTICLE; BEHAVIOR; CONTROLLED STUDY; DISEASE CARRIER; E-MAIL; ETHNICITY; GENERAL PRACTITIONER; HEALTH CARE POLICY; HEMOGLOBINOPATHY; HUMAN; MIDWIFE ATTITUDE; PEER GROUP; PHYSICIAN ATTITUDE; PRIORITY JOURNAL; REGISTRATION; SCREENING TEST; STRUCTURED QUESTIONNAIRE;

ATTITUDE OF HEALTH PERSONNEL; GENERAL PRACTITIONERS; GENETIC TESTING; HEMOGLOBINOPATHIES; HETEROZYGOTE; HUMANS; MIDWIFERY;

EID: 84867746941     PISSN: 10184813     EISSN: 14765438     Source Type: Journal    
DOI: 10.1038/ejhg.2012.72     Document Type: Article

References (44)

1. Dauphin-McKenzie N, Gilles JM, Jacques E, Harrington T.: Sickle cell anaemia in the female patient. Obstet Gynecol Surv 2006; 61: 343-352.
2. Platt OS, Brambilla DJ, Rosse WF et al: Mortality in sickle cell disease. Life expectancy and risk factors for early death. N Engl J Med 1994; 330: 1639-1644.
3. Weatherall DJ, Clegg JB: Inherited haemoglobin disorders: an increasing global health problem. Bull World Health Organ 2001; 79: 704-712.
4. Modell B, Darlison M: Global epidemiology of haemoglobin disorders and derived service indicators. Bull World Health Organ 2008; 86: 480-487.
5. Giordano PC, Harteveld CL: Prevention of hereditary haemoglobinopathies in the Netherlands. Ned Tijdschr Geneeskd 2006; 150: 2137-2141.
6. Peters M, Fijnvandraat K, van dT X et al: One-third of the new paediatric patients with sickle cell disease in the Netherlands are immigrants and do not benefit from neonatal screening. Arch Dis Child 2010; 95: 822-825.
7. World Health Organisation: Sickle Cell Anaemia, the 59th World Health Assembly; 117th Session 2006 Agenda item 4.8; Resolution EB117.R3.
8. De Wert GM, Dondorp WJ, Knoppers BM: Preconception care and genetic risk: ethical issues. J Community Genet 2011; e-pub ahead of print 29 December 2011.
9. Population genetic screening programmes: technical, social and ethical issues. Eur J Hum Genet 2003; Suppl 2: S5-S7.
10. National Health Service: Sickle Cell & Thalassaemia Screening Programme 2011. Available from: http://sct.screening.nhs.uk (accessed on 16 August 2011).
11. National Collaborating Centre for Women's and Children's Health. Antenatal care. Routine Care for the Healthy Pregnant Woman. London: National Institute for Health and Clinical Excellence 2010 Report no: CG62.
12. Hinton CF, Grant AM, Grosse SD: Ethical implications and practical considerations of ethnically targeted screening for genetic disorders: the case of hemoglobinopathy screening. Ethn Health 2011; 16: 377-388.
13. American College of Obstetricians and Gynecologists: Practice Bulletin no. 78: hemoglobinopathies in pregnancy. Obstet Gynecol 2007; 109: 229-237.
14. Lakeman P, Henneman L, Bezemer PD, Cornel MC, ten Kate LP.: Developing and optimizing a decisional instrument using self-reported ancestry for carrier screening in a multi-ethnic society. Genet Med 2006; 8: 502-509.
15. Dyson SM, Culley L, Gill C et al: Ethnicity questions and antenatal screening for sickle cell/thalassaemia [EQUANS] in England: a randomised controlled trial of two questionnaires. Ethn Health 2006; 11: 169-189.
16. Jans S, Beentjes M: Anaemia in Midwifery Practice, Guideline. Utrecht: KNOV, 2010.
17. Nederlands Huisartsen genootschap: Preconception Care, M97. Utrecht: NHG, 2011.
18. Wijk MAM, Mel M, Muller PA et al: Anaemia, Guideline, M76. Utrecht: NHG, 2003.
19. Anionwu EN, Atkin K: The Politics of Sickle Cell and Thalassaemia. Buckingham: Open University Press, 2001.
20. Dyson SM: Ethnicity and Screening for Sickle Cell/Thalassaemia. Oxford: Elsevier Churchill, 2005.
21. Tapper M: In the blood. Philadelphia: University of Pennsylvania Press, 1999.
22. Jans SM, van El CG, Houwaart ES et al: A case study of haemoglobinopathy screening in the Netherlands: witnessing the past, lessons for the future. Ethn Health 2011; e-pub ahead of print 8 August 2011.
23. Weinreich SS, de Lange-de Klerk ES, Rijmen F et al: Raising awareness of carrier testing for hereditary haemoglobinopathies in high-risk ethnic groups in the Netherlands: a pilot study among the general public and primary care providers. BMC Public Health 2009; 9: 338.
24. Ajzen I: The theory of planned behaviour. Organ Behav Hum 1991; 50: 179-211.
25. Tsianakas V, Calnan M, Atkin K, Dormandy E, Marteau TM: Offering antenatal sickle cell and thalassaemia screening to pregnant women in primary care: a qualitative study of GPs' experiences. Br J Gen Pract 2010; 60: 822-828.
26. Vansenne F, de Borgie CA, Legdeur M, Spauwen MO, Peters M: Providing Genetic Risk Information to Parents of Newborns with Sickle Cell Trait: Role of the General Practitioner in Neonatal Screening. Genet Test Mol Biomarkers 2011; 15: 671-675.
27. Houwink EJ, van Luijk SJ, Henneman L, van d V, Jan DG, Cornel MC.: Genetic educational needs and the role of genetics in primary care: a focus group study with multiple perspectives. BMC Fam Pract 2011; 12: 5.
28. van Hellemondt RE, Hendriks AC, Breuning MH: Regulating the use of genetic tests: Is Duch law an example for other countries with regard to DTC genetic testing? Amsterdam Law Forum 2011. Available from: http://ojs.ubvu.vu. nl/alf/article/view/194/368 (accessed on December 2011).
29. National Institute for Public Health and the Environment: Dutch National Atlas of Public health 2011. Available from: www.zorgatlas.nl (accessed on 16 August 2011).
30. The Netherlands Perinatal Registry: Perinatal Care in The Netherlands 2008 Utrecht, PRN-Foundation, 2011.
31. Poppelaars FA, Ader HJ, Cornel MC. et al: Attitudes of potential providers towards preconceptional cystic fibrosis carrier screening. J Genet Couns 2004; 13: 31-44.
32. Achterbergh R, Lakeman P, Stemerding D, Moors EH, Cornel MC: Implementation of preconceptional carrier screening for cystic fibrosis and haemoglobinopathies: a sociotechnical analysis. Health Policy 2007; 83: 277-286.
33. National Institute for Public Health and the Environment: Pre-and Neonatal Screening in The Netherlands 2011. Available from: www.rivm.nl/pns-en (accessed on 16 August 2011).
34. Morgan MA, Driscoll DA, Mennuti MT, Schulkin J: Practice patterns of obstetrician-gynecologists regarding preconception and prenatal screening for cystic fibrosis. Genet Med 2004; 6: 450-455.
35. Committee on Genetics ACOG. Update on carrier screening for cystic fibrosis committee opinion. no 486. Obstet Gynecol 2011; 117: 1028-1031.
36. National Institute for Public Health and the Environment: Bloodtests for Pregnant Women 2011. Available from: www.rivm.nl/pns-en/bloodtest (accessed on 16 August 2011).
37. Dormandy E, Michie S, Hooper R, Marteau TM: Low uptake of prenatal screening for Down syndrome in minority ethnic groups and socially deprived groups: a reflection of women's attitudes or a failure to facilitate informed choices? Int J Epidemiol 2005; 34: 346-352.
38. Lakeman P, Plass AM, Henneman L et al: 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.
39. Tsianakas V, Atkin K, Calnan MW, Dormandy E, Marteau TM: Offering antenatal sickle cell and thalassaemia screening to pregnant women in primary care: a qualitative study of women's experiences and expectations of participation. Health Expect 2011; e-pub ahead of print 3 March 2011.
40. Pal van der S, Kesteren van N, Dommelen van P, Detmar S: Willingness to Participate in Carrier Screening for Haemoglobinopathies Amongst High Risk Groups, Report no.: 09.049. Leiden, TNO KvL 2009.
41. Darr AR: Ethnic diversity and genetics: implications for families and service providers in the UK; in Broertjes JJS, Henneman L, Beemer FA (eds): Community Genetics. Past and Future. Utrecht: Department of Biological Education, 2002.
42. Wailoo K, Pemberton S: The Troubled Dream of Genetic Medicine. Baltimore: The John Hopkins University Press, 2006.
43. Wilson JMG Jungner.: Principles and Practice of Screening for Disease. Public Health Papers no. 34. Geneva: World health Organisation, 1968.
44. Lakeman P, Henneman L, Bezemer PD, Cornel MC, ten Kate LP: Developing and optimizing a decisional instrument using self-reported ancestry for carrier screening in a multi-ethnic society. Genet Med 2006; 8: 502-509.