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

Genetics in Medicine

Volumn 10, Issue 11, 2008, Pages 820-830

  Lakeman, Phillis ^a   Plass, Anne Marie C ^a   Henneman, Lidewij ^a   Bezemer, Pieter D ^a   Cornel, Martina C ^a   Ten Kate, Leo P ^a  

^a VU UNIVERSITY MEDICAL CENTER   (Netherlands)

Author keywords

Ancestry; Anxiety; Cystic fibrosis; Hemoglobinopathies; Knowledge; Preconceptional carrier screening; Reproductive intentions; Satisfaction; Understanding; Western and Non Western

Indexed keywords

ANXIETY; ARTICLE; CONSULTATION; CYSTIC FIBROSIS; FOLLOW UP; GENETIC SCREENING; HEMOGLOBINOPATHY; HETEROZYGOTE DETECTION; HUMAN; KNOWLEDGE; NETHERLANDS; OUTCOME ASSESSMENT; PATIENT SATISFACTION; PLESIOMORPHY; PSYCHOLOGIC ASSESSMENT; RECALL; REPRODUCTION; STRUCTURED QUESTIONNAIRE;

ATTITUDE TO HEALTH; CYSTIC FIBROSIS; ETHNIC GROUPS; FEMALE; GENETIC COUNSELING; GENETIC SCREENING; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HEMOGLOBINOPATHIES; HUMANS; MALE; NETHERLANDS;

EID: 57449095825     PISSN: 10983600     EISSN: None     Source Type: Journal    
DOI: 10.1097/GIM.0b013e318188d04c     Document Type: Article

References (61)

1. Committee on Genetics, American College of Obstetricians and Gynecologists. ACOG Committee Opinion. Number 325, December 2005. Update on carrier screening for cystic fibrosis. Obstet Gynecol 2005;106:1465-1468.
2. Gilbert F. Cystic fibrosis carrier screening: steps in the development of a mutation panel. Genet Test 2001;5:223-227.
3. Angastiniotis M, Modell B. Global epidemiology of hemoglobin disorders. Ann NY Acad Sci 1998;850:251-269.
4. Modell B, Darlison M, Birgens H, et al. Epidemiology of haemoglobin disorders in Europe: an overview. Scand J Clin Lab Invest 2007;67:39-69.
5. Weatherall DJ, Clegg JB. Inherited haemoglobin disorders: an increasing global health problem. Bull World Health Organ 2001;79:704-712.
6. Raeburn JA. Screening for carriers of cystic fibrosis. Screening before pregnancy is needed. BMJ 1994;309:1428-1429.
7. Kenen RH, Schmidt RM. Stigmatization of carrier status: social implications of heterozygote genetic screening programs. Am J Public Health 1978;68:1116-1120.
8. Markel H. The stigma of disease: implications of genetic screening. Am J Med 1992; 93:209-215.
9. McQueen MJ. Some ethical and design challenges of screening programs and screening tests. Clin Chim Acta 2002;315:41-48.
10. Axworthy D, Brock DJ, Bobrow M, Marteau TM. Psychological impact of population-based carrier testing for cystic fibrosis: 3-year follow-up. UK Cystic Fibrosis Follow-Up Study Group. Lancet 1996;347:1443-1446.
11. Bekker H, Denniss G, Modell M, Bobrow M, Marteau T. The impact of population based screening for carriers of cystic fibrosis. J Med Genet 1994;31:364-368.
12. Gason AA, Sheffield E, Bankier A, et al. Evaluation of a Tay-Sachs disease screening program. Clin Genet 2003;63:386-392.
13. Hegwer G, Fairley C, Charrow J, Ormond KE. Knowledge and attitudes toward a free education and Ashkenazi Jewish carrier testing program. J Genet Couns 2006;15:61-70.
14. Henneman L, Bramsen I, Van der Ploeg HM, Ten Kate LP. Preconception cystic fibrosis carrier couple screening: impact, understanding, and satisfaction. Genet Test 2002;6:195-202.
15. Marteau TM. Psychological implications of genetic screening. Birth Defects Orig Artic Ser 1992;28:185-190.
16. Payne Y, Williams M, Cheadle I, et al. Carrier screening for cystic fibrosis in primary care: evaluation of a project in South Wales. The South Wales Cystic Fibrosis Carrier Screening Research Team. Clin Genet 1997;51:153-163.
17. Watson EK, Mayall ES, Lamb J, Chapple J, Williamson R. Psychological and social consequences of community carrier screening programme for cystic fibrosis. Lancet 1992;340:217-220.
18. Callanan NP, Cheuvront BJ, Sorenson JR. CF carrier testing in a high risk population: anxiety, risk perceptions, and reproductive plans of carrier by "non-carrier" couples. Genet Med 1999;1:323-327.
19. Honnor M, Zubrick SR, Walpole I, Bower C, Goldblatt J Population screening for cystic fibrosis in Western Australia: community response. Am J Med Genet 2000;93: 198-204.
20. Watson EK, Mayall E, Chapple J, et al. Screening for carriers of cystic fibrosis through primary health care services. BMJ 1991;303:504-507.
21. Clausen H, Brandt NJ, Schwartz M, Skovby F. Psychological impact of carrier screening for cystic fibrosis among pregnant women. Eur J Hum Genet 1996;4:120-123.
22. Loader S, Caldwell P, Kozyra A, et al. Cystic fibrosis carrier population screening in the primary care setting. Am J Hum Genet 1996;59:234-247.
23. Bekker H, Modell M, Denniss G, et al. Uptake of cystic fibrosis testing in primary care: supply push or demand pull? BMJ 1993;306:1584-1586.
24. Giordano PC, Plancke A, Van Meir CA, et al. Carrier diagnostics and prevention of hemoglobinopathies in early pregnancy in The Netherlands: a pilot study. Prenat Diagn 2006;26:719-724.
25. Henneman L, Bramsen I, Van der Ploeg HM, et al. Participation in preconceptional carrier couple screening: characteristics, attitudes, and knowledge of both partners. J Med Genet 2001;38:695-703.
26. Poppelaars FA, Van der Wal G, Braspenning JC, et al. Possibilities and barriers in the implementation of a preconceptional screening programme for cystic fibrosis carriers: a focus group study. Public Health 2003;117:396-403.
27. Tambor ES, Bernhardt BA, Chase GA, et al. Offering cystic fibrosis carrier screening to an HMO population: factors associated with utilization. Am J Hum Genet 1994; 55:626-637.
28. ACOG (American College of Obstetricians and Gynecologists). Committee on Genetics. Committee opinion. Genetic screening for hemoglobinopathies, number 238, July 2000. Int J Gynaecol Obstet 2001;74:309-310.
29. European Society of Human Genetics. Population genetic screening programmes: technical, social and ethical issues. Eur J Hum Genet 2003;11(suppl 2):S5-S7.
30. Grody WW, Cutting GR, Klinger KW, Richards CS, Watson MS, Desnick RJ. Laboratory standards and guidelines for population-based cystic fibrosis carrier screening. Genet Med 2001;3:149-154.
31. Bouwhuis CB, Moll HA. Determination of ethnicity in children in The Netherlands: two methods compared. Eur J Epidemiol 2003;18:385-388.
32. Cummins C, Winter H, Cheng KK, Marie R, Silcocks P, Varghese C. An assessment of the Nam Pehchan computer program for the identification of names of south Asian ethnic origin. J Public Health Med 1999;21:401-406.
33. Marteau TM, Dormandy E, Michie S. A measure of informed choke. Health Expect 2001;4:99-108.
34. EUROGAPPP PROJECT 1999-2000 Public and Professional Policy Committee (PPPC). Population genetic screening programmes: Proposed recommendations of the European Society of Human Genetics. Eur J Hum Genet 2000;8:998-1000.
35. Statistics Netherlands. Voorburg/Heerlen, 2008. Available at: www.cbs.nl. Accessed May 11, 2008.
36. Stronks K, Ravelli AC, Reijneveld SA. Immigrants in the Netherlands: equal access for equal needs? J Epidemiol Community Health 2001;55:701-707.
37. Lakeman P, Henneman L, Bezemer PD, Cornel MC, 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.
38. Bobadilla JL, Macek M Jr, Fine JP, Farrell PM. Cystic fibrosis: a worldwide analysis of CFTR mutations - correlation with incidence data and application to screening. Hum Mutat 2002;19:575-606.
39. Kilinç MO, Ninis VN, Dagli E, et al. Highest heterogeneity for cystic fibrosis: 36 mutations account for 75% of all CF chromosomes in Turkish patients. Am J Med Genet 2002;113:250-257.
40. Newman JE, Sorenson JR, DeVellis BM, Cheuvront B. Gender differences in psychosocial reactions to cystic fibrosis carrier testing. Am J Med Genet 2002; 113:151-157.
41. Denayer L, Welkenhuysen M, Evers-Kiebooms G, Cassiman JJ, Van den Berghe H. Risk perception after CF carrier testing and impact of the test result on reproductive decision making. Am J Med Genet 1997;69:422-428.
42. Gordon C, Walpole I, Zubrick SR, Bower C. Population screening for cystic fibrosis: knowledge and emotional consequences 18 months later. Am J Med Genet A 2003; 120:199-208.
43. Evers-Kiebooms G, Denayer L, Welkenhuysen M, Cassiman JJ, Van den Berghe H. A stigmatizing effect of the carrier status for cystic fibrosis? Clin Genet 1994;46:336-343.
44. Rowley PT, Lipkin M Jr, Fisher L. Screening and genetic counseling for beta-thalassemia trait in a population unselected for interest: comparison of three counseling methods. Am J Hum Genet 1984;36:677-689.
45. Zeesman S, Clow CL, Cartier L, Scriver CR. A private view of heterozygosity: eight-year follow-up study on carriers of the Tay-Sachs gene detected by high school screening in Montreal. Am J Med Genet 1984;18:769-778.
46. Henneman L, Poppelaars FA, Ten Kate LP. Evaluation of cystic fibrosis carrier screening programs according to genetic screening criteria. Genet Med 2002;4:241-249.
47. Lena-Russo D, Badens C, Aubinaud M, et al. Outcome of a school screening programme for carriers of haemoglobin disease. J Med Screen 2002;9:67-69.
48. Mitchell JJ, Capua A, Clow C, Scriver CR. Twenty-year outcome analysis of genetic screening programs for Tay-Sachs and beta-thalassemia disease carriers in high schools. Am J Hum Genet 1996;59:793-798.
49. Petrou M, Modell B, Shetty S, Khan M, Ward RH. Long-term effect of prospective detection of high genetic risk on couples' reproductive life: data for thalassaemia. Prenat Diagn 2000;20:469-474.
50. Poppelaars FA, Henneman L, Ader HJ, et al. Preconceptional cystic fibrosis carrier screening: attitudes and intentions of the target population. Genet Test 2004;8:80-89.
51. Marteau TM, Bekker H. The development of a six-item short-form of the state scale of the Spielberger State-Trait Anxiety Inventory (STAI). Br J Clin Psychol 1992;31: 301-306.
52. Van der Bij AK, De Weerd S, Cikot RJ, Steegers EA, Braspenning JC. Validation of the dutch short form of the state scale of the Spielberger State-Trait Anxiety Inventory: considerations for usage in screening outcomes. Community Genet 2003;6:84-87.
53. Giordano PC, Dihal AA, Harteveld CL. Estimating the attitude of immigrants toward primary prevention of the hemoglobinopathies. Prenat Diagn 2005;25: 885-893.
54. Ahmed S, Green JM, Hewison J. Attitudes towards prenatal diagnosis and termination of pregnancy for thalassaemia in pregnant Pakistani women in the North of England. Prenat Diagn 2006;26:248-257.
55. Modell B, Harris R, Lane B, et al. Informed choice in genetic screening for thalassaemia during pregnancy: audit from a national confidential inquiry. BMJ 2000;320: 337-341.
56. Decruyenaere M, Evers-Kiebooms G, Denayer L, Welkenhuysen M. Uptake and impact of carrier testing for cystic fibrosis. A review and a theoretical framework about the role of knowledge, health beliefs and coping. Community Genet 1998;1: 23-35.
57. National Institutes of Health. Genetic testing for cystic fibrosis. National Institutes of Health Consensus Development Conference Statement on genetic testing for cystic fibrosis. Arch Intern Med 1999;159:1529-1539.
58. Health Council of the Netherlands. 2003. Public awareness about genetics. The Hague, Health Council of the Netherlands; publication no. 2003/05. Available at: www.gr.nl.
59. Baars MJ, Henneman L, Ten Kate LP. Deficiency of knowledge of genetics and genetic tests among general practitioners, gynecologists, and pediatricians: a global problem. Genet Med 2005;7:605-610.
60. Health Council of the Netherlands. 1994. Genetic screening. The Hague, Health Council of the Netherlands; publication no. 1994/22E. Available at: www.gr.nl.
61. Health Council of the Netherlands. 2007. Preconception care: a good beginning. 2007. The Hague, Health Council of the Netherlands; publication no. 2007/19. Available at: www.gr.nl.