Attitudes to prenatal testing and termination of pregnancy for fetal abnormality: A comparison of white and Pakistani women in the UK

Prenatal Diagnosis

Volumn 27, Issue 5, 2007, Pages 419-430

  Hewison, Jenny ^a   Green, Josephine M ^b   Ahmed, Shenaz ^c   Cuckle, Howard S ^c   Hirst, Janet ^c   Hucknall, Clare ^c   Thornton, Jim G ^d  

^a UNIVERSITY OF LEEDS   (United Kingdom)

^b UNIVERSITY OF YORK   (United Kingdom)

^c UNIVERSITY OF LEEDS   (United Kingdom)

^d UNIVERSITY OF NOTTINGHAM   (United Kingdom)

Author keywords

Attitudes; Ethnicity; Prenatal testing; Termination of pregnancy

Indexed keywords

ANENCEPHALUS; ARTICLE; ATTITUDE TO HEALTH; CONTROLLED STUDY; DUCHENNE MUSCULAR DYSTROPHY; ETHNIC GROUP; FEMALE; FETUS DISEASE; HEALTH SURVEY; HUMAN; HUMAN EXPERIMENT; LEARNING DISORDER; MEDICAL RESEARCH; PREGNANCY; PREGNANCY TERMINATION; PRENATAL DIAGNOSIS; PRIORITY JOURNAL; QUADRIPLEGIA; QUESTIONNAIRE; RACE DIFFERENCE; TRISOMY 13; TRISOMY 18; UNITED KINGDOM; ABORTION; ADULT; ATTITUDE; COMPARATIVE STUDY; CULTURAL FACTOR; DECISION MAKING; ETHNOLOGY; GENETIC COUNSELING; MULTIPLE MALFORMATION SYNDROME; PAKISTAN; PSYCHOLOGICAL ASPECT;

ABNORMALITIES, MULTIPLE; ABORTION, EUGENIC; ADULT; ATTITUDE; CULTURAL CHARACTERISTICS; DECISION MAKING; FEMALE; GENETIC COUNSELING; GREAT BRITAIN; HUMANS; PAKISTAN; PREGNANCY; PRENATAL DIAGNOSIS; QUESTIONNAIRES;

EID: 34347271679     PISSN: 01973851     EISSN: 10970223     Source Type: Journal    
DOI: 10.1002/pd.1701     Document Type: Article

References (45)

1. Ahmed S, Green J, Hewison J. 2005. Antenatal thalassaemia carrier testing: women's perceptions of 'information' and 'consent'. J Med Screen 12(2): 69-77.
2. Ahmed S, Green J, Hewison J. 2006. Attitudes towards prenatal diagnosis and termination of pregnancy for thalassaemia in pregnant Pakistani women in the North of England. Prenat Diagn 26: 248-257.
3. Ahmed S, Saleem M, Sultana N, et al. 2000. Prenatal diagnosis of beta-thalassaemia in Pakistan: experience in a Muslim country. Prenat Diagn 20: 378-383.
4. Alkuraya FS, Kilani RA. 2001. Attitude of Saudi families affected with hemoglobinopathies towards prenatal screening and abortion and the influence of religious ruling (Fatwa). Prenat Diagn 21(6): 448-451.
5. Atkin K, Ahmad W, Anionwu E. 1998. Screening and counselling for sickle cell disorders and thalassaemia: the experience of parents and health professionals. Soc Sci Med 47(11): 1639-1651.
6. Bell M, Stoneman Z. 2000. Reactions to prenatal testing: reflection of religiosity and attitudes toward abortion and people with disabilities. Am J Mem Retard 105: 1-13.
7. Boyle RJ, Savulescu J. 2003. Prenatal diagnosis for "minor" genetic abnormalities is ethical. Am J Bioeth 3(1): W60-W65.
8. Caughey AB, Washington AE, Gildengorin V, Kuppermann M. 2004. Assessment of demand for prenatal diagnostic testing using willingness to pay. Obstet Gynecol 103: 539-545.
9. Chilaka V, Konje J, Stewart C, Narayan H, Taylor D. 2001. Knowledge of Down Syndrome in pregnant women from different ethnic groups. Prenat Diagn 21: 159-164.
10. Costakos D, Abramson RK, Edwards JG, Rizzo WB, Best RG. 1991. Attitudes toward presymptomatic testing and prenatal diagnosis for adrenoleukodystrophy among affected families. Am J Med Genet 41(3): 295-300.
11. Coxon APM. 1982. The User's Guide to Multidimensional Scaling. Heinemann: London.
12. Davies SC, Cronin E, Gill M, Greengross P, Hickman M, Normand C. Screening for sickle cell disease and thallassaemia: a systematic review with supplementary research. Health Technol Assess 2000. 4(3) 1-117.
13. Evans MI, Sobiecki MA, Krivchenia EL et al. 1996. Parental decisions to terminate/continue following abnormal cytogenetic prenatal diagnosis: "What" is still more important than "when". Am J Med Genet 61(4): 353-355.
14. Denayer L, Evers-Kiebooms G, De Boeck K, Van Den Berghe H. 1991. Reproductive decision making of aunts and uncles of a vchild with cystic fibrosis: genetic risk perception and attitudes toward carrier identification nadn prenatal diagnosis. Am J Med Genet 44(1): 104-111.
15. Dormandy E, Michie S, Hooper R, Marteau TM. 2005. 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 34: 346-352.
16. Elias S, Annas GJ. 1994. Generic consent for genetic screening. N Engl J Med 330: 1611-1613.
17. Evers-Kiebooms G, Denayer L, Decruyenaere M, van den Berghe H. 1993. Community attitudes towards prenatal testing for congenital handicap. J Reprod Infant Psychol 11: 21-30.
18. Genetics and Public Policy Center. 2004. Reproductive Genetic Testing: What America Thinks, Available at: www.DNApolicy.org Accessed 12 Sept 2005.
19. Gollust SE, Thompson RE, Gooding HC, Biesecker BB. 2003. Living with achondroplasia: attitudes toward population screening and correlation with quality of life. Prenat Diagn 23(12): 1003-1008.
20. Green JM, Hewison J, Bekker HL, Bryant LD, Cuckle HS. Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technol Assess 2004. 8(33) 1-128.
21. Harris R, Harris HJ. 1995. Primary care for patients at genetic risk. BMJ 311: 579-580.
22. Henneman L, Bramsen I, VanOs ThAM, et al. 2001. Attitudes towards reproductive issues and carrier testing among adult patients and parents of children with cystic fibrosis (CF). Prenat Diagn 21(1): 1-9.
23. Hietala M, Hakonen A, Aro AR, Niemela P, Peltonen L, Aula P. 1995. Attitudes toward genetic testing among the general population and relatives of patients with a severe genetic disease: a survey from Finland. Am J Hum Genet 56: 1493-1500.
24. Human Genetics Alert. 2000. The Regulation of Pre-implantation Genetic Diagnosis: Response to the HFEA/ACGT Consultation from the Campaign Against Human Genetic Engineering, Available at: www.hgalert.org. Accessed 12 Sept 2005.
25. Johnson SC. 1962. Hierarchical clustering schemes. Psychometrika 32: 241-254.
26. Kronn D, Jansen V, Ostrer H. 1998. Carrier screening for cystic fibrosis, gaucher disease, and Tay-sachs disease in the Ashkenazi Jewish population. Arch Intern Med 158: 777-781.
27. Kuppermann M, Learman LA, Gates E et al. 2006. Beyond race or ethnicity and socio-economic status. Obstet Gynecol 107: 1087-1097.
28. Lafayette D, Abuelo D, Passero MA, Tantravahi U. 1999. Attitudes toward cystic fibrosis carrier and prenatal testing and utilization of carrier testing among relatives of individuals with cystic fibrosis. J Genet Couns 8(1): 17-36.
29. Lodder LN, Frets PG, Trijsburg RW, Meijers-Heijboer EJ, Klijn JGM, Niermeijer MF. 2000. Attitudes towards termination of pregnancy in subjects who underwent presymptomatic testing for the BRCA1/BRCA2 gene mutation in The Netherlands. J Med Genet 37: 883-884.
30. Mansfield C, Hopfer S, Marteau TM. 1999. Termination rates after prenatal diagnosis of Down syndrome, spina bifida, anencephaly, and Turner and Klinefelter syndromes: a systematic literature review. Prenat Diagn 19: 808-812.
31. Milner KK, Collins EE, Connors GR, Petty EM. 1998. Attitudes of young adults to prenatal screening and genetic correction for human attributes and psychiatric conditions. Am J Med Genet 76: 111-119.
32. Modell B, Harris R, Lane B, et al. 2000. Informed choice in genetic screening for thalassaemia during pregnancy: audit from a national confidential inquiry. BMJ 320: 337-341.
33. Murray J, Cuckle H, Taylor G, Hewison J. 1997. Screening for fragile X syndrome: information needs of health planners. Health Technol Assess 1(4): 1-69.
34. Murray J, Cuckle H, Taylor G, Littlewood J, Hewison J. 1999. Screening for cystic fibrosis. Health Technol Assess 3(8): 1-97.
35. Rowe RE, Garcia J, Davidson LL. 2004. Social and ethnic inequalities in the offer and uptake of prenatal screening and diagnosis in the UK: a systematic review. Public Health 118: 177-189.
36. Scott R. 2005. Prenatal testing, reproductive autonomy, and disability interests. Camb Q Healthc Ethics 14: 65-82.
37. Shaffer B, Caughey A, Norton M. 2006. Variation in the decision to terminate pregnant in the setting of fetal aneuploidy. Prenat Diagn 26: 667-671.
38. Skinner D, Sparkman KL, Bailey DB Jr. 2003. Screening for fragile X syndrome: parent attitudes and perspectives. Genet Med 5(5): 378-384.
39. SPSS Inc. 1999. SPSS Version 10.0, Chicago, IL.
40. Statham H. 2002. Prenatal Diagnosis of Fetal Abnormality: The Decision to Terminate the Pregnancy and the Psychological Consequences. Fetal and Maternal Medicine Review 13: 213-247.
41. The Human Genetics Commission. 2005. Choosing the Future: Genetics and Reproductive Decision-Making. Analysis of Responses to the Consultation, Available at www.peoplescienceandpolicy.com. Accessed 31 July 2006.
42. Weatherall DJ. 2005. The global problem of genetic disease. Ann Hum Biol 32: 117-122.
43. Wertz DC, Rosenfield JM, Janes SR, Erbe RW. 1991. Attitudes towards abortion among parents of children with cystic fibrosis. Am J Public Health 81: 992-996.
44. Zahed L, Bou-dames J. 1997. Acceptance of first-trimester prenatal diagnosis for the haemoglobinopathies in Lebanon. Prenat Diagn 17(5): 423-428.
45. Zlotogora J. 2002. Parental decisions to abort or continue a pregnancy with an abnormal finding after an invasive prenatal test. Prenat Diagn 22: 1102-1106.