Challenges in the care for consanguineous couples: An exploratory interview study among general practitioners and midwives

BMC Family Practice

Volumn 13, Issue , 2012, Pages

  Teeuw, Marieke E ^a   Hagelaar, Anouk ^a   Ten Kate, Leo P ^a   Cornel, Martina C ^a   Henneman, Lidewij ^a  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Consanguinity; Cultural barriers; Preconception and prenatal care; Primary care; Risk communication

Indexed keywords

ARTICLE; CONSANGUINITY; FEMALE; GENERAL PRACTICE; GENETIC COUNSELING; HEALTH PERSONNEL ATTITUDE; HUMAN; INTERPERSONAL COMMUNICATION; MALE; MATERNAL CARE; METHODOLOGY; MIDWIFE; PATIENT REFERRAL; PREGNANCY; PRENATAL CARE; QUALITATIVE RESEARCH; RELIGION; REPRODUCTIVE BEHAVIOR; RISK; SOCIAL PSYCHOLOGY; SPOUSE;

ATTITUDE OF HEALTH PERSONNEL; COMMUNICATION; CONSANGUINITY; FEMALE; GENERAL PRACTICE; GENETIC COUNSELING; HUMANS; MALE; MIDWIFERY; PRECONCEPTION CARE; PREGNANCY; PRENATAL CARE; QUALITATIVE RESEARCH; REFERRAL AND CONSULTATION; RELIGION; REPRODUCTIVE BEHAVIOR; RISK; SOCIAL VALUES; SPOUSES;

EID: 84867750896     PISSN: None     EISSN: 14712296     Source Type: Journal    
DOI: 10.1186/1471-2296-13-105     Document Type: Article

References (35)

1. Global prevalence of consanguinity http://www.consang.net
2. Reniers G, Post-immigration survival of traditional marriage patterns: consanguineous marriage among Turkish and maroccon immigrants in Belgium Gent: Department of Population Studies, University of Gent 2010
3. Consanguineous marriages, pearls and perils: Geneva international consanguinity workshop report. Hamamy H, Antonarakis SE, Cavalli-Sforza LL, Temtamy S, Romeo G, Kate LP, Bennett RL, Shaw A, Megarbane A, Van Duijn C, et al. Genet Med 2011 13 841 847 10.1097/GIM.0b013e318217477f 21555946
4. Genetic counseling and screening of consanguineous couples and their offspring: recommendations of the national society of genetic counselors. Bennett RL, Motulsky AG, Bittles A, Hudgins L, Uhrich S, Doyle DL, Silvey K, Scott CR, Cheng E, McGillivray B, J Genet Couns 2002 11 97 119 10.1023/A:1014593404915 (Pubitemid 41450839)
5. Science and society: genetic counseling and customary consanguineous marriage. Modell B, Darr A, Nat Rev Genet 2002 3 225 229 11972160 (Pubitemid 34506591)
6. Waelput AJM, Achterberg PW, Desire to have children in consanguineous parents: risks and genetic counseling Bilthoven: RIVM, National Institute for Public Health and Environment 2007
7. Do consanguineous parents of a child affected by an autosomal recessive disease have more DNA identical-by-descent than similarly-related parents with healthy offspring? Design of a case-control study. Teeuw ME, Henneman L, Bochdanovits Z, Heutink P, Kuik DJ, Cornel MC, Ten Kate LP, BMC Med Genet 2010 11 113 20637082
8. Genetic risk. Ten Kate LP, J Community Genet 2012 3 159 166 10.1007/s12687-011-0066-9 22893513
9. Current practice and future interest of GPs and prospective parents in pre-conception care in The Netherlands. Poppelaars FA, Cornel MC, Ten Kate LP, Fam Pract 2004 21 307 309 10.1093/fampra/cmh316 15128694 (Pubitemid 38765308)
10. NHG-standaard preconceptiezorg [The Dutch college of general practitioners guideline preconception care]. De Jong-Potjer LC, Beentjes M, Bogchelman M, Jaspar AHJ, Van Asselt KM, Huisarts Wet 2011 54 310 312
11. De Jong A, KNOV-standpunt preconceptiezorg [KNOV standpoint preconception care] Bilthoven: KNOV [Royal Dutch Organisation of Midwives] 2005
12. Wildschut HIJ, NVOG Indicatie prenatale diagnostiek [NVOG indication prenatal diagnostics] Utrecht: NVOG [Dutch Society of Obstetrics and Gynaecology] 2000
13. Inconsistencies in genetic counseling and screening for consanguineous couples and their offspring: the need for practice guidelines. Bennett RL, Hudgins L, Smith CO, Motulsky AG, Genet Med 1999 1 286 292 10.1097/00125817- 199909000-00007 11258630 (Pubitemid 129736031)
14. Differential use of available genetic tests among primary care physicians in the United States: results of a national survey. Shields AE, Burke W, Levy DE, Genet Med 2008 10 404 414 10.1097/GIM.0b013e3181770184 18496223
15. Ongelijk verdeeld: migranten vragen minder én ander klinisch genetisch advies [Unequally divided: migrants request less as well as different clinical genetic advice]. Talan D, Van Elderen T, Hoogeboom J, Medisch Contact 2004 59 1828 1829
16. Screening and counselling for sickle cell disorders and thalassaemia: the experience of parents and health professionals. Atkin K, Ahmad WI, Anionwu EN, Soc Sci Med 1998 47 1639 1651 10.1016/S0277-9536(98)00261-5 9877334 (Pubitemid 28545389)
17. Commentary: The background and outcomes of the first-cousin marriage controversy in Great Britain. Bittles AH, Int J Epidemiol 2009 38 1453 1458 10.1093/ije/dyp313 19926668
18. Consanguinity and its relevance to clinical genetics. Bittles A, Clin Genet 2001 60 89 98 11553039 (Pubitemid 32791662)
19. Consanguineous marriage and genetics: a positive relationship. Darr A, Culture, kinship and genes, towards cross-cultural genetics Cardiff: MacMillan Press, Clarke A, Parsons E, 1997 83 97
20. The missing element: consanguinity as a component of genetic risk assessment. Bishop M, Metcalfe S, Gaff C, Genet Med 2008 10 612 620 10.1097/GIM.0b013e31817d2a65 18641519
21. Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem. Baars MJ, Henneman L, Ten Kate LP, Genet Med 2005 7 605 610 10.1097/01.gim.0000182895. 28432.c7 16301861 (Pubitemid 41753011)
22. Raising the profile of genetics in primary care. Qureshi N, Modell B, Modell M, Nat Rev Genet 2004 5 783 790 15510169 (Pubitemid 39336362)
23. Genetic educational needs and the role of genetics in primary care: a focus group study with multiple perspectives. Houwink EJ, Van Luijk SJ, Henneman L, Van der Vleuten C, Dinant GJ, Cornel MC, BMC Fam Pract 2011 12 5 10.1186/1471-2296-12-5 21329524
24. Triandis HC, Interpersonal behaviour Monterey: Brooks/Cole 1970
25. The Triandis model for the study of health and illness behavior: A social behavior theory with sensitivity to diversity. Facione NC, Adv Nurs Sci 1993 15 49 58
26. BioMed Central Qualitative Research Review Guidelines-RATS http://www.biomedcentral.com/ifora/rats
27. Turkish female immigrants intentions to participate in preconception carrier screening for hemoglobinopathies in the Netherlands: an empirical study. Van Elderen T, Mutlu D, Karstanje J, Passchier J, Tibben A, Duivenvoorden HJ, Public Health Genomics 2010 13 415 423 10.1159/000314643 20805680
28. 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. Lakeman P, Plass AM, Henneman L, Bezemer PD, Cornel MC, Ten Kate LP, Genet Med 2008 10 820 830 10.1097/GIM.0b013e318188d04c 18941425
29. Estimating the attitude of immigrants toward primary prevention of the hemoglobinopathies. Giordano PC, Dihal AA, Harteveld CL, Prenat Diagn 2005 25 885 893 10.1002/pd.1206 16123973 (Pubitemid 41508870)
30. Attitudes towards prenatal diagnosis and termination of pregnancy for thalassaemia in pregnant Pakistani women in the North of England. Ahmed S, Green JM, Hewison J, Prenat Diagn 2006 26 248 257 10.1002/pd.1391 16475227
31. Decision-Making and Ante-Natal Screening for Sickle Cell and Thalassaemia Disorders. Atkin K, Ahmed S, Hewison J, Green JM, Curr Sociol 2008 56 77 98 10.1177/0011392107084380
32. Consanguineous marriages: Preconception consultation in primary health care settings. Hamamy H, J Community Genet 2012 3 185 192 10.1007/s12687-011- 0072-y 22109912
33. Shared decision making and non-directiveness in genetic counselling. Elwyn G, Gray J, Clarke A, J Med Genet 2000 37 135 138 10.1136/jmg.37.2.135 10662816 (Pubitemid 30245899)
34. Consanguineous marriages among parents of Down patients. Basaran N, Cenani A, Sayli BS, Ozkinay C, Artan S, Seven H, Basaran A, Dincer S, Clin Genet 1992 42 13 15 1387592
35. Carrier testing for severe childhood recessive diseases by next-generation sequencing. Bell CJ, Dinwiddie DL, Miller NA, Hateley SL, Ganusova EE, Mudge J, Langley RJ, Zhang L, Lee CC, Schilkey FD, et al. Sci Transl Med 2011 3 65ra4 10.1126/scitranslmed.3001756 21228398