Fetuses with neural tube defects: Ethical approaches and the role of health care professionals in Turkish health care institutions

Nursing Ethics

Volumn 12, Issue 1, 2005, Pages 59-78

  Doǧan, Hanzade ^a,b   Sahinoglu, Serap ^c  

^a Istanbul University ^*  (Turkey)

^b ISTANBUL UNIVERSITY   (Turkey)

^c ANKARA UNIVERSITY   (Turkey)

Author keywords

Decision; Ethics; Neural tube defects; Nursing; Spina bifida; Turkey

Indexed keywords

CONGENITAL MALFORMATION; HEALTH CARE; HEALTH CARE PERSONNEL; HEALTH PRACTITIONER; MEDICAL DECISION MAKING; MEDICAL EDUCATION; MEDICAL ETHICS; NEURAL TUBE; QUESTIONNAIRE; REVIEW; SURVIVAL RATE;

EMPIRICAL APPROACH; GENETICS AND REPRODUCTION; HEALTH CARE AND PUBLIC HEALTH;

DECISION MAKING; ETHICS COMMITTEES, CLINICAL; ETHICS, CLINICAL; ETHICS, INSTITUTIONAL; ETHICS, MEDICAL; ETHICS, NURSING; FEMALE; HUMANS; INTERPROFESSIONAL RELATIONS; MOTHERS; NEURAL TUBE DEFECTS; NURSE'S ROLE; PREGNANCY; PROFESSIONAL COMPETENCE; PROFESSIONAL-PATIENT RELATIONS; QUALITY ASSURANCE, HEALTH CARE; QUESTIONNAIRES; RISK FACTORS; TURKEY;

EID: 12244275725     PISSN: 09697330     EISSN: 14770989     Source Type: Journal    
DOI: 10.1191/0969733005ne758oa     Document Type: Review

References (74)

1. Aǧirbaşli H, Çalişkan S eds. Spina Bifida nedir? (What is spina bifida?) Istanbul: Istanbul University Publications, 2002: 1-4, 19 (in Turkish).
2. Berkow R. The Merck manual of diagnosis and therapy, fourteenth edition. Rahway NJ: Merck Sharp and Dohme, 1982: 1828-29.
3. Cheschier N. Neural tube defects. Int J Gynaecol Obstet 2003; 83: 123-33.
4. Zhu H, Wicker NJ, Volcik K et al. Promoter haplotype combinations for the human PDGFRA gene is associated with the risk of neural tube defects. Mol Genet Metab 2004; 81: 127-32.
5. Tunçbilek E et al. [other authors not available] Türkiye'de Konjenital Malformasyon Siklhiǧi, Daǧihmi, Risk Faktörleri ve Yeni Doǧan antropometric Deǧerleri. (The prevalence, distribution, risk factors of congenital malformations in Turkey and anthropometric values of the newborn in Turkey. A nationwide survey.) Ankara: Hacettepe University, May 1996 (in Turkish).
6. Muller F. Prenatal biochemical screening for neural tube defects. Childs Nerv Syst 2003; 19: 433-35.
7. De Wals P, Rusen ID, Lee NS et al. Trend in prevalence of neural tube defects in Quebec. Birth Defects Res Part A Clin Mol Teratol 2003; 67: 919-23.
8. Pei LJ, Li Z, Li S et al. Sex distribution of neural tube defects and their birth outcome in high- and low-prevalence areas of China. Zhonghua Yu Fang Yi Xue Za Zhi 2003; 37: 338-41.
9. 80-86 EUROCAT Working Group. Prevalence of neural tube defects in 20 regions of Europe and the impact of prenatal diagnosis. J Epidemiol Community Health 1991; 45: 52-58.
10. Wilson RD, Davies G, Desilets V et al. The use of folic acid for the prevention of neural tube defects and other congenital anomalies. J Obstet Gynaecol Can 2003; 25: 959-73.
11. Sawulicka-Oleszczuk H, Kostuch M. Wplyw pierwotnej profilaktyki kwasern foliowym naczestosc wad cewy nerwowej w wojewodztwie lubelskim. (Influence of folic acid in primary prevention of neural tube defects.) Ginekol Pol 2003; 74: 533-37 (in Polish).
12. Deger M. Tibbi Deontoloji ve Tibbi Etik Ders Notlan. (Lecture notes of medical deontology and medical ethics.) Istanbul: Istanbul University Publications, 2004: 26-35 (in Turkish).
13. Jonsen A, Siegler M, Winslade W. Clinical ethics, fourth edition. New York: McGraw Hill, 1998: 1-46, 117-121, 165.
14. Beauchamp TL, Childress J. Informed consent. In: Veatch MR, ed. Medical ethics. Boston, MA: Jones and Bartlett, 1989: 173-99.
15. Ackerman T, Strong C. A casebook of medical ethics. New York: Oxford University Press, 1989: 53-56, 61-64, 71-75.
16. Ahronheim J, Moreno J, Zuckerman C. Ethics in clinical practice. Boston, MA: Little Brown, 1994: 310-29, 337-45.
17. Willke JC. Abortion. Cincinnati, OH: Hayes, 1991.
18. Garrison FH. An introduction to the history of medicine. Philadelphia, PA: Saunders, 1929: 171, 712, 798, 878.
19. Castiglioni A. Histoire de la médecine. (History of medicine.) Paris: Payot, 1931: 128, 177, 245, 262 (in French).
20. Bettmann OL. A pictorial history of medicine. Springfield, IL: Charles C Thomas, 1956: 41.
21. Atabek E, Deger M. Tibbi Deontoloji Konulari (Topics of medical deontology.) Istanbul: Istanbul University, 2000: 115-25 (in Turkish).
22. Sehiralti M. Aile Plantamasi Uygulamalarinda Tip Etiǧi ile İlgili Sorunlarin İncelenmesi. (Problems related to medical ethics for family planning practice [Thesis].) Istanbul: Istanbul University, Department of Deontology, 1993 (in Turkish).
23. Sachedine Z. Islam, procreation and the law. Int Fam Perspect 1990; 16: 107-11.
24. Yakit İ. Kuran'da İnsanin Yaradiliçi ve Evrimi. (Creation and evolution of the human being in the Holy Koran.) Ufuk Çizgisi 1990: 1(6): 8-15 (in Turkish).
25. Camp J. Magic, myth and medicine. London: Priory Press, 1973: 35-48.
26. Fromer MJ. Abortion ethics. Nurs Outlook 1982; 30: 234-40.
27. Lyons A, Petrucelli J. Medicine: an illustrated history. New York: Abradale Press, 1987: 50, 82, 101, 214-15.
28. Yurtcan E. Türk Hukukunda Kürtaj ve Uygulamasi. (Abortion in Turkish legislation and application.) Istanbul: Istanbul Publications, 1984: 102-103, 107, 108, 112 (in Turkish).
29. Simon A. A right to life for the unborn? The current debate on abortion in Germany and Norbert Hoerster's legal-philosophical justification for the right to life. J Med Philos 2000; 25: 220-39.
30. Renne EP. The pregnancy that does not stay: the practice and perception of abortion by Ekiti Yoruba women. Soc Sci Med 1996; 42: 483-94.
31. Debate on the legalization of abortion in Zimbabwe. Wom Global Network Reprod Rights Newsletter. 1994; 45: 18-19.
32. Bills to decriminalize abortion in Brazil. Wom Global Network Reprod Rights Newsletter. 1994; 45: 18.
33. Beller FK, Reeve J. Brain life and brain death - the anencephalic as an explanatory example. A contribution to transplantation. J Med Philos 1989; 14: 5-23.
34. Johnsen D. A new threat to pregnant women's autonomy. Hastings Cent Rep 1987; 17(4): 33-40.
35. Kaufman BA. Neural tube defects. Pediatr Clin North Am 2004; 51: 389-419.
36. Oi S. Diagnosis, outcome, and management of fetal abnormalities: fetal hydrocephalus. Childs Nerv Syst 2003; 19: 508-16.
37. Grunberg J, Rebori A, Verocay MC. Peritoneal dialysis in children with spina bifida and ventriculoperitoneal shunt: one center's experience and review of the literature. Perit Dial Int 2003; 23: 481-86.
38. Di Lorenzo C, Benninga MA. Pathophysiology of pediatric fecal incontinence. Gastroenterology 2004; 126(1 suppl 1): S33-40.
39. Del Gado R, Aceto G, Del Gaizo D et al. Desmopressin for the treatment of nocturnal bedwetting in patients with neural tube closure defects. J Urol 2004; 171: 1656-58.
40. Erdinçler P, Kaynar M, Canbaz B et al. Meningomyeloselli Çocuklarda Prenatal Tani Konma Sansi. (Prenatal diagnosis in children with meningomyelocele.) Pernatoloji Dergisi 1995; 3(3-4): 31-34.
41. Erdinçler P, Kaynar M, Akar Z. Meningomyeloselin Cerrahi Tedavisi. (Surgical treatment of meningomyelocele.) Cerrahpasa Tip Dergisi 1996; 27(1): 33-37.
42. Oi S. Current status of prenatal management of fetal spina bifida in the world: worldwide cooperative survey on the medico-ethical issues. Childs Nerv Syst 2003; 19: 596-9.
43. Bouchard L, Renaud M, Kremp O, Dallaire L. Selective abortion: a new moral order? Consensus and debate in the medical community. Int J Health Serv 1995; 25: 65-84.
44. Julian C, Huard P, Gouvernet J, Mattei JF, Ayme S. Physicians' acceptability of termination of pregnancy after prenatal diagnosis in southern France. Prenat Diagn 1989; 9(2): 77-89.
45. Fletcher J, Lombardo P, Marshall M et al. Introduction to clinical ethics, second edition. Frederrick, MD: University Publishing Group, 1997; 181-205.
46. Knapp R, Miller C. Clinical epidemiology and biostatistics. Baltimore, MD: Williams and Wilkin 1992; 2, 10-11,110.
47. Görkey Ş. Gebeliǧin Sonlandirilmasinda Karşilaşilan Etik Sorunlar. (Ethical problems about abortion.) In: Hatemi H, Doǧan H eds. Medikal Etik III. (Medical ethics III.) Istanbul: Yuce, 2001: 80-109.
48. Beauchamp T, Childress JF. Principles of biomedical ethics, third edition. New York: Oxford University Press, 1989.
49. Weir R. Selective treatment of handicapped newborns: moral dilemmas in neonatal medicine. New York: Oxford University Press, 1984.
50. Ramsey P. Ethics at the edges of life. New Haven, CT: Yale University Press, 1978: 155.
51. Doǧan H. Neural Tüp Defektleri ve Etik Yaklaşimlar. (Neural tube defects and ethical approaches.) In: Hatemi H, Doǧan H, eds. Medikal Etik III. (Medical ethics III.) Istanbul: Yuce, 2001: 151-54.
52. Freeman JM. Making decisions for the severely handicapped newborn. J Health Polit Policy Law 1986; 11: 285-96.
53. The prognosis for babies with meningomyelocele and high lumbar paraplegia at birth. Comment by an ethical working group. Lancet 1985; ii: 996-97.
54. Bliton MJ. Ethics: 'life before birth' and moral complexity in maternal-fetal surgery for spina bifida. Clin Perinatol 2003; 30: 449-64.
55. Lyerly AD, Mahowald MB. Maternal-fetal surgery: the fallacy of abstraction and the problem of equipoise. Health Care Anal 2001; 9: 151-65.
56. Mrozik E. Problematik und Möglichkeiten der Fetalchirurgie. (Problems of and possibilities in fetal surgery.) Geburtshilfe Frauenheilkd 1985; 45: 503-10 (in German).
57. Smith A. The teaching of medical ethics. J Med Ethics 1985; 11: 35-36.
58. Karmarkar SJ. Spina bifida clinic - organisational aspects. Indian J Pediatr 1997; 64(6 suppl): 83-85.
59. Chervenak FA, McCullough LB. A comprehensive ethical framework for fetal research and its application to fetal surgery for spina bifida. Am J Obstet Gynecol 2002; 187: 10-14.
60. Chervenak FA, Mc McCullough LB. The Cornell University experience. Fetal Diagn Ther 2003; 18: 217-22.
61. Andrews DR. Fostering ethical competency: an ongoing staff development process that encourages professional growth and staff satisfaction. J Contin Educ Nurs 2004; 35: 27-33.
62. Van Cleve L. Nurses' experience caring for anencephalic infants who are potential organ donors. J Pediatr Nurs 1993; 8: 79-84.
63. Perkin RM, Young T, Freier MC et al. Stress and distress in pediatric nurses: lessons from Baby K. Am J Crit Care 1997; 6: 225-32.
64. Burkett KW. Trends in pediatric rehabilitation. Nurs Clin North Am 1989; 24: 239-55.
65. Hasenau SM, Covington C. Neural tube defects. Am J Matern Child Nurs 2002; 27(2): 87-91.
66. Grant SS. Prenatal genetic screening. Online J Issues Nurs 2000; 5(3): 2. Retrieved 8 March, 2004, from: http://www.nursingworld.org/ojin/topic 13/tpc 13_3.htm
67. Fry ST. The ethical dimensions of policy for prenatal diagnostic technologies: the case of maternal serum alpha-fetoprotein screening. ANS Adv Nurs Sci 1987; 9(3): 44-55.
68. Schrander-Stumpel C. Preconception care: challenge of the new millennium? Am J Med Genet 1999; 89(2): 58-61.
69. Zipitis CS, Paschalides C. Caring for a child with spina bifida: understanding the child and carer. J Child Health Care 2003; 7: 101-12.
70. Sawin KI, Bellin MH, Roux G et al. The experience of parenting an adolescent with spina bifida. Rehabil Nurs 2003; 28: 173-85.
71. Benjamin C. The use of health care resources by young adults with spina bifida. Z Kinderchir 1988; 43(suppl 2): 12-14.
72. Holmbeck GN, Johnson SZ, Wills KE et al. Observed and perceived parental overprotection in relation to psychosocial adjustment in preadolescents with a physical disability: the mediational role of behavioural autonomy. J Consult Clin Psychol 2002; 70: 96-110.
73. Monsen RB. Mothers' experiences of living worried when parenting children with spina bifida. J Pediatr Nurs 1999; 14: 157-63.
74. Macias MM, Saylor CF, Rowe BP, Bell NL. Age-related parenting stress differences in mothers of children with spina bifida. Psychol Rep 2003; 93: 1223-32.