Antenatal thalassaemia carrier testing: Women's perceptions of 'information' and 'consent'

Journal of Medical Screening

Volumn 12, Issue 2, 2005, Pages 69-77

  Ahmed, Shenaz ^a   Green, Josephine ^b   Hewison, Jenny ^a  

^a UNIVERSITY OF LEEDS   (United Kingdom)

^b UNIVERSITY OF YORK   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; ATTITUDE; BETA THALASSEMIA; CONTROLLED STUDY; FEMALE; HETEROZYGOTE; HUMAN; INFORMED CONSENT; MAJOR CLINICAL STUDY; MEDICAL DECISION MAKING; PAKISTAN; PERCEPTION; PREGNANT WOMAN; PRENATAL DIAGNOSIS; THALASSEMIA MAJOR; UNITED KINGDOM;

ADOLESCENT; ADULT; ATTITUDE TO HEALTH; ENGLAND; FEMALE; GENETIC SCREENING; HETEROZYGOTE; HUMANS; INFORMED CONSENT; MASS SCREENING; PAKISTAN; PATIENT EDUCATION; PERCEPTION; PREGNANCY; QUESTIONNAIRES; RESEARCH DESIGN; THALASSEMIA;

EID: 20644466017     PISSN: 09691413     EISSN: None     Source Type: Journal    
DOI: 10.1258/0969141053908258     Document Type: Article

References (34)

1. Department of Health for England, S.N.I.a.W. Second Report of the UK National Screening Committee 2002; http://www.nsc.nhs.uk/pdfs/secondreport.pdf
2. Nuffield Council on Bioethics. Genetic Screening: Ethical Issues. London: Nuffield Foundation, 1993
3. Royal College of Physicians. Prenatal Diagnosis and Genetic Screening: Community and Service Implications. London: The Royal College of Physician, 1989
4. Bekker H, Thornton JG, Airey CM, Connelly JB. Informed decision-making: an annotated bibliography and systematic review. Health Technol Assess 1999;3:1-57
5. Jepson RG, Forbes CA, Sowden AJ, Lewis RA. Increasing informed uptake and non-uptake of screening: evidence from a systematic review. Health Expect 2001;4:116-30
6. Jefferson J. Screening for Down's syndrome and Other Selected Anomalies: A Briefing. Leeds: Nuffield Institute for Health, 1994
7. Geller G, Botkin JR, Green MJ, et al. Genetic testing for susceptibility to adult-onset cancer. The process and content of informed consent. JAMA 1997;277:1467-74
8. General Medical Council. Seeking Patients' Consent: The Ethical Considerations. London: GMC, 1999
9. Hussain MAM, Flynn DM, Green N, Hussein S, Hoffbrand AV. Subcutaneous infusion and intramuscular injection of desferrioxamine in patients with transfusional iron overload. Lancet 1976;ii:1278-80
10. Propper RD, Cooper B, Rufo RR. Continuous subcutaneous infusion of desferrioxamine in patients with iron overload. N Engl J Med 1977;297:418-23
11. Lucarelli G, Galimberti M, Polichi P, et al. Bone marrow transplantation in patients with thalassaemia. N Engl J Med 1990;322:417-21
12. Modell B, Anionwu EN. Guidelines for screening for haemoglobin disorders: service specifications for low and high prevalence DHAs In: Ethnicity and Health: Reviews of Literature and Guidance for Purchasers in the Areas of Cardiovascular Disease, Mental Health and Haemoglobinopathies. York: NHS Centre for Reviews and Dissemination, University of York, 1996;127-224
13. Zeuner D, Ades AE, Karnon J, Brown J, Dezateux C, Anionwu EN. Antenatal and neonatal haemoglobinopathy screening in the UK: review and economic analysis. Health Technol Assess 1999;3:1-86
14. Ahmed S, Green JM, Hewison J. What are Pakistani women's experiences of antenatal carrier screening for β-thalassaemia in the UK? Why it is difficult to answer this question? Public Health 2002;116:297-9
15. Ende J, Kazis L, Ash A, Moskowitz MA. Measuring patients' desire for autonomy: decision making and information-seeking preferences among medical patients. J Gen Intern Med 1989;4:23-30
16. Fallowfield L. Offering choice of surgical treatment to women with breast cancer. Patient Educ Couns 1997;30:209-14
17. Ost DE. The 'right' not to know. Med Philos 1984;9:301-12
18. Emery J. Is informed choice in genetic testing a different breed of QJ;informed decision-making? A discussion paper. Health Expect 2001;4:81-6
19. Bluff R, Holloway I. 'They know best': women's perceptions of midwifery care during labour and childbirth. Midwifery 1994;10:157-164
20. Moazam F. Families, patients, and physicians in medical decisionmaking: a Pakistani perspective. Hastings Cent Rep 2000;30:28-37
21. Strauss A, Corbin J. Basics of Qualitative Research: Techniques and Procedures for Developing Grounded Theory. 2nd edn. London: Sage Publications, 1998
22. Marteau TM, Johnston M, Kidd J, et al. Psychological models in predicting uptake of prenatal screening. Psychol Health 1992;6:13-22
23. Burn J, Fairgrieve S, Franks P, White I, Magnay D. Audit of maternal serum screening: strategies to augment counselling in response to women's views. Eur J Hum Genet 1996;4:108-12
24. Churchill H, Benbow A. Informed choice in maternity services. Br J Midwifery 2000;8:41-7
25. Stapleton H, Thomas G. Information as communicated and used In: M Kirkham H Stapleton, eds. Informed Choice in Maternity Care: An Evaluation of Evidence Based Leaflets CRD Report 20. York: NHS Centre for Reviews and Dissemination University of York, 2001;89-102
26. Marteau TM, Slack J, Kidd J, Shaw RW. Presenting a routine screening test in antenatal care: practice observed. Public Health 1992;106:131-41
27. Marteau TM, Plenicar M, Kidd J. Obstetricians presenting amniocentesis to pregnant women: practice observed. J Rep Infant Psychol 1993;11:3-11
28. Press N, Browner CH. Why women say yes to prenatal diagnosis. Soc Sci Med 1997;45:979-89
29. Anionwu EN, Atkin K. The Politics of Sickle Cell and Thalassaemia. Buckingham: Open University Press, 2001
30. 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;8:1-24
31. Bowes AM, Domokos TM. Pakistani women and maternity care: raising muted voices. Soc Health Illness 1996;18:45-65
32. Wrong D. Power, Its Forms, Bases and Uses. Oxford: Basil Blackwell, 1979
33. Shaw A, Ahmed M. Translating genetics leaflets into languages other than English: lesson from an assessment of Urdu material. J Gen Counsel 2004;14:322-42
34. UK Thalassaemia Society. All you need to know about being a carrier of β thalassaemia 1996