Ethical dilemmas in retrospective studies on genital surgery in the treatment of intersexual infants

Cambridge Quarterly of Healthcare Ethics

Volumn 13, Issue 4, 2004, Pages 394-403

  Sytsma, Sharon ^a,b  

^a Department of Philosophy   (United States)

^b Ethics Subcommittee   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

CHILD HEALTH; ETHICS; GENITAL MALFORMATION; HERMAPHRODITISM; HUMAN; INFORMED CONSENT; LEGAL ASPECT; MEDICAL INFORMATION; MEDICAL PRACTICE; MEDICAL RESEARCH; MORALITY; PATERNALISM; PRACTICE GUIDELINE; PRIVACY; PROSPECTIVE STUDY; PSYCHOLOGICAL ASPECT; RETROSPECTIVE STUDY; REVIEW; RISK ASSESSMENT; SENSITIVITY ANALYSIS; SURGICAL TECHNIQUE;

EID: 7044245701     PISSN: 09631801     EISSN: None     Source Type: Journal    
DOI: 10.1017/s0963180104134105     Document Type: Review

References (49)

1. Conditions leading to infant genital surgery include cloacal exstrophy, aphallia, micropenis, ambiguous genitalia resulting from gonadal dysgenesis, congenital adrenal hyperplasia, 5 alpha-reductase deficiency, androgyn insensitivity syndrome, Klinefelter's disease, mosaicism or other chromosomal aberrations, or from prenatal externally induced exposure to androgens or antiandrogens. The traditional standard of practice, articulated as recently as 1996 by the American Academy of Pediatrics, relies on evidence supplied mainly by articles having John Money as the lead author. Money had recommended sex reassignment surgery for a baby male twin whose penis was ablated accidentally during circumcision, and reported the decision to raise the child as a girl as a success. See: Money J, Ehrhardt AA. Man and Woman, Boy and Girl. Baltimore, MD: Johns Hopkins University Press; 1972; Money J. Prenatal hormones and postnatal socialization in gender identity. Nebraska Symposium on Motivation 1973;21:2211-95; Money J. Ablatio penis: normal male infant sex-reassignment as a girl. Archives of Sexual Behavior 1975;5-71.
2. Conditions leading to infant genital surgery include cloacal exstrophy, aphallia, micropenis, ambiguous genitalia resulting from gonadal dysgenesis, congenital adrenal hyperplasia, 5 alpha-reductase deficiency, androgyn insensitivity syndrome, Klinefelter's disease, mosaicism or other chromosomal aberrations, or from prenatal externally induced exposure to androgens or antiandrogens. The traditional standard of practice, articulated as recently as 1996 by the American Academy of Pediatrics, relies on evidence supplied mainly by articles having John Money as the lead author. Money had recommended sex reassignment surgery for a baby male twin whose penis was ablated accidentally during circumcision, and reported the decision to raise the child as a girl as a success. See: Money J, Ehrhardt AA. Man and Woman, Boy and Girl. Baltimore, MD: Johns Hopkins University Press; 1972; Money J. Prenatal hormones and postnatal socialization in gender identity. Nebraska Symposium on Motivation 1973;21:2211-95; Money J. Ablatio penis: normal male infant sex-reassignment as a girl. Archives of Sexual Behavior 1975;5-71.
3. Conditions leading to infant genital surgery include cloacal exstrophy, aphallia, micropenis, ambiguous genitalia resulting from gonadal dysgenesis, congenital adrenal hyperplasia, 5 alpha-reductase deficiency, androgyn insensitivity syndrome, Klinefelter's disease, mosaicism or other chromosomal aberrations, or from prenatal externally induced exposure to androgens or antiandrogens. The traditional standard of practice, articulated as recently as 1996 by the American Academy of Pediatrics, relies on evidence supplied mainly by articles having John Money as the lead author. Money had recommended sex reassignment surgery for a baby male twin whose penis was ablated accidentally during circumcision, and reported the decision to raise the child as a girl as a success. See: Money J, Ehrhardt AA. Man and Woman, Boy and Girl. Baltimore, MD: Johns Hopkins University Press; 1972; Money J. Prenatal hormones and postnatal socialization in gender identity. Nebraska Symposium on Motivation 1973;21:2211-95; Money J. Ablatio penis: normal male infant sex-reassignment as a girl. Archives of Sexual Behavior 1975;5-71.
4. Colapinto J. The true story of John/Joan. Rolling Stone Magazine 11 Dec 1997:56-97; Colapinto J. As Nature Made Him: The Boy Who Was Raised as a Girl. New York: Harper Collins; 2002. See also: Preves S. Intersex and Identity. Piscataway, NJ: Rutgers University Press; 2003:chap. 4.
5. Colapinto J. The true story of John/Joan. Rolling Stone Magazine 11 Dec 1997:56-97; Colapinto J. As Nature Made Him: The Boy Who Was Raised as a Girl. New York: Harper Collins; 2002. See also: Preves S. Intersex and Identity. Piscataway, NJ: Rutgers University Press; 2003:chap. 4.
6. Colapinto J. The true story of John/Joan. Rolling Stone Magazine 11 Dec 1997:56-97; Colapinto J. As Nature Made Him: The Boy Who Was Raised as a Girl. New York: Harper Collins; 2002. See also: Preves S. Intersex and Identity. Piscataway, NJ: Rutgers University Press; 2003:chap. 4.
7. Kipnis K, Diamond M. Pediatric ethics and the surgical assignment of sex. Journal of Clinical Ethics 1998;398-410.
8. For examples of such appeals for cooperative research, see: Creighton S, Minto C. Managing intersex. BMJ 2001;323:1264-5; Blizzard R. Gender assignment and reassignment in 46,XY pseudohermaphroditism and related conditions: a commentary. Growth, Genetics, and Hormones 2000;16(3); Daaboul J, Frader J. Ethics and the management of the patient with intersex: a middle way. Journal of Pediatric Endocrinology and Metabolism 2001;14:1575-83; Ranke M. Editorial. Hormone Research 2002;56:1-2; Sytsma S. Business as usual? should physicians continue to recommend genital surgery for intersexual infants? Dialogues in Pediatric Urology 2002;25(6):5-7.
9. For examples of such appeals for cooperative research, see: Creighton S, Minto C. Managing intersex. BMJ 2001;323:1264-5; Blizzard R. Gender assignment and reassignment in 46,XY pseudohermaphroditism and related conditions: a commentary. Growth, Genetics, and Hormones 2000;16(3); Daaboul J, Frader J. Ethics and the management of the patient with intersex: a middle way. Journal of Pediatric Endocrinology and Metabolism 2001;14:1575-83; Ranke M. Editorial. Hormone Research 2002;56:1-2; Sytsma S. Business as usual? should physicians continue to recommend genital surgery for intersexual infants? Dialogues in Pediatric Urology 2002;25(6):5-7.
10. For examples of such appeals for cooperative research, see: Creighton S, Minto C. Managing intersex. BMJ 2001;323:1264-5; Blizzard R. Gender assignment and reassignment in 46,XY pseudohermaphroditism and related conditions: a commentary. Growth, Genetics, and Hormones 2000;16(3); Daaboul J, Frader J. Ethics and the management of the patient with intersex: a middle way. Journal of Pediatric Endocrinology and Metabolism 2001;14:1575-83; Ranke M. Editorial. Hormone Research 2002;56:1-2; Sytsma S. Business as usual? should physicians continue to recommend genital surgery for intersexual infants? Dialogues in Pediatric Urology 2002;25(6):5-7.
11. For examples of such appeals for cooperative research, see: Creighton S, Minto C. Managing intersex. BMJ 2001;323:1264-5; Blizzard R. Gender assignment and reassignment in 46,XY pseudohermaphroditism and related conditions: a commentary. Growth, Genetics, and Hormones 2000;16(3); Daaboul J, Frader J. Ethics and the management of the patient with intersex: a middle way. Journal of Pediatric Endocrinology and Metabolism 2001;14:1575-83; Ranke M. Editorial. Hormone Research 2002;56:1-2; Sytsma S. Business as usual? should physicians continue to recommend genital surgery for intersexual infants? Dialogues in Pediatric Urology 2002;25(6):5-7.
12. For examples of such appeals for cooperative research, see: Creighton S, Minto C. Managing intersex. BMJ 2001;323:1264-5; Blizzard R. Gender assignment and reassignment in 46,XY pseudohermaphroditism and related conditions: a commentary. Growth, Genetics, and Hormones 2000;16(3); Daaboul J, Frader J. Ethics and the management of the patient with intersex: a middle way. Journal of Pediatric Endocrinology and Metabolism 2001;14:1575-83; Ranke M. Editorial. Hormone Research 2002;56:1-2; Sytsma S. Business as usual? should physicians continue to recommend genital surgery for intersexual infants? Dialogues in Pediatric Urology 2002;25(6):5-7.
13. Fanaroff A, Martin R. Neonatal-Perinatal Medicine: Diseases of the Fetus and Infant: Vol. 2, 6th ed. Amsterdam: Elsevier; 1997:1508-22; Donn SM. The Michigan Manual: A Guide to Neonatal Intensive Care, 2nd ed. Mount Kisco, NY: Futura; 1997:367-9.
14. Fanaroff A, Martin R. Neonatal-Perinatal Medicine: Diseases of the Fetus and Infant: Vol. 2, 6th ed. Amsterdam: Elsevier; 1997:1508-22; Donn SM. The Michigan Manual: A Guide to Neonatal Intensive Care, 2nd ed. Mount Kisco, NY: Futura; 1997:367-9.
15. Gooren LG. Androgen-resistance syndromes considerations of gender assignment. Current Therapy in Endocrinology and Metabolism 1997;6(7):380-4.
16. Natarajan A. Medical ethics and truth-telling in the case of androgen insensitivity syndrome. CMAJ 1996;154:1829-33.
17. Page LJ. The newborn with ambiguous genitalia. Neonatal Network 1994;13(5):20.
18. Slijper FME, Drop SLS, Molenaar JC, Scholtmeijer RJ. Neonates with abnormal development assigned the female sex: parent counseling. Journal of Sex Education and Therapy 1994;20(1):9-17.
19. Renshaw DC. Sexual birth defects: telling the parents. Resident and Staff Physician 1993;39(2):87-90.
20. Newman K, Randolph J, Anderson K. The surgical management of infants and children with ambiguous genitalia. Annals of Surgery 1992;215:644.
21. Donahoe P. The diagnosis and treatment of infants with intersex abnormalities. Pediatric Clinics of North America 1987;34(5):133.
22. Mazur T. Ambiguous genitalia: detection and counseling. Pediatric Nursing 1983:417-31.
23. Kessler S. The medical construction of gender: case management of intersexed infants. Signs: Journal of Women in Culture and Society 1990;16(1):3-26.
24. Dreger A. Ambiguous sex - or ambivalent medicine? ethical issues in the treatment of intersexuality. Hastings Center Report 1998;283:24-35.
25. See: Dreger A, ed. Intersex in the Age of Ethics. Hagerstown, MD: University Publishing Group; 1999; in particular, chapters by: Dreger A. A history of intersex: from the age of gonads to the age of consent; Groveman SA. The Hanukkah bush: ethical implications in the clinical management of intersex; Preves S. For the sake of the children: destigmatizing intersexuality; Coventry M. Finding the words; and Wilson B, Reiner W. Management of intersex: a shifting paradigm.
26. See: Dreger A, ed. Intersex in the Age of Ethics. Hagerstown, MD: University Publishing Group; 1999; in particular, chapters by: Dreger A. A history of intersex: from the age of gonads to the age of consent; Groveman SA. The Hanukkah bush: ethical implications in the clinical management of intersex; Preves S. For the sake of the children: destigmatizing intersexuality; Coventry M. Finding the words; and Wilson B, Reiner W. Management of intersex: a shifting paradigm.
27. See: Dreger A, ed. Intersex in the Age of Ethics. Hagerstown, MD: University Publishing Group; 1999; in particular, chapters by: Dreger A. A history of intersex: from the age of gonads to the age of consent; Groveman SA. The Hanukkah bush: ethical implications in the clinical management of intersex; Preves S. For the sake of the children: destigmatizing intersexuality; Coventry M. Finding the words; and Wilson B, Reiner W. Management of intersex: a shifting paradigm.
28. See: Dreger A, ed. Intersex in the Age of Ethics. Hagerstown, MD: University Publishing Group; 1999; in particular, chapters by: Dreger A. A history of intersex: from the age of gonads to the age of consent; Groveman SA. The Hanukkah bush: ethical implications in the clinical management of intersex; Preves S. For the sake of the children: destigmatizing intersexuality; Coventry M. Finding the words; and Wilson B, Reiner W. Management of intersex: a shifting paradigm.
29. See: Dreger A, ed. Intersex in the Age of Ethics. Hagerstown, MD: University Publishing Group; 1999; in particular, chapters by: Dreger A. A history of intersex: from the age of gonads to the age of consent; Groveman SA. The Hanukkah bush: ethical implications in the clinical management of intersex; Preves S. For the sake of the children: destigmatizing intersexuality; Coventry M. Finding the words; and Wilson B, Reiner W. Management of intersex: a shifting paradigm.
30. See: Dreger A, ed. Intersex in the Age of Ethics. Hagerstown, MD: University Publishing Group; 1999; in particular, chapters by: Dreger A. A history of intersex: from the age of gonads to the age of consent; Groveman SA. The Hanukkah bush: ethical implications in the clinical management of intersex; Preves S. For the sake of the children: destigmatizing intersexuality; Coventry M. Finding the words; and Wilson B, Reiner W. Management of intersex: a shifting paradigm.
31. See note 16, Dreger 1999:16-7; Groveman 1999:26; Preves 1999:53-7, Wilson, Reiner 1999:125. See also: Dreger A. Hermaphrodites and the Medical Invention of Sex. Cambridge, MA: Harvard University Press; 1998.
32. See: Diamond M, Sigmundson K. Sex reassignment at birth: a long term review and clinical implications. Archives of Pediatric and Adolescent Medicine 1997;151:298-304; see note 2, Colapinto 1997; Colapinto 2000.
33. Lawrence McCullough of the Baylor Institute of Medicine expressed this view with regard to NATFI's proposed retrospective studies in personal communications with the author on several occasions.
34. See note 3, Kipnis, Diamond 1998:407.
35. The Nuremberg Code. Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law. Washington, DC: U.S. Government Printing Office, 1949:181-2; World Medical Association. Declaration of Helsinki, I, 9 and 10; Department of Health and Human Services (DHHS). Rules and Regulations. 45 CFR 46.116.
36. The Nuremberg Code. Trials of War Criminals before the Nuremberg Military Tribunals under Control Council Law. Washington, DC: U.S. Government Printing Office, 1949:181-2; World Medical Association. Declaration of Helsinki, I, 9 and 10; Department of Health and Human Services (DHHS). Rules and Regulations. 45 CFR 46.116.
37. See note 3, Kipnis, Diamond 1998, on the weak epistemic grounds of our present practices.
38. See: Beh H, Diamond M. An emerging ethical and medical dilemma: should physicians perform sex assignment surgery on infants with ambiguous genitalia? Michigan Journal of Gender and Law 2000;7(1):1-63. See also: Greenberg J. Legal aspects of gender assignment. Presented at the first Congress on the Hormonal and Genetic Basis of Sexual Differentiation Disorders, May 2002.
39. See: Beh H, Diamond M. An emerging ethical and medical dilemma: should physicians perform sex assignment surgery on infants with ambiguous genitalia? Michigan Journal of Gender and Law 2000;7(1):1-63. See also: Greenberg J. Legal aspects of gender assignment. Presented at the first Congress on the Hormonal and Genetic Basis of Sexual Differentiation Disorders, May 2002.
40. See note 4, Sytsma 2002:5-7.
41. See: Blackless M, Charuvastra A, Derryck A, Fausto-Sterling A, Lauzanne K, Lee E. How sexually dimorphic are we? review and synthesis. American Journal of Human Biology 2000;12(2):151-66; also see note 15, Dreger 1998:26.
42. See note 3, Kipnis, Diamond 1998:405. They suggest a moratorium on infant genital surgeries unless parents give truly informed consent.
43. The term "inflicted insight" was coined by Baumrind. See: Baumrind D. Research using intentional deception. American Psychologist 1985;40:165-74.
44. DHHS. Rules and Regulations. 45 CFR 46.116.
45. It may be that we do not have a right to all of the information about our medical conditions. For instance, with the completion of the human genome project, people will want to know the facts about their own genetic makeup. However, the medical profession has neither the time nor the resources to provide the necessary counseling required for this information to be safely conveyed to individuals.
46. Burton G. General discussion of legal issues affecting sexual assignment of intersex infants born with ambiguous genitalia. Presented at the third International Research Ethics Conference, University of South Florida, 9 Mar 2002.
47. Levine RJ. Ethics and Regulation of Clinical Research, 2nd ed. New Haven, CT: Yale University Press; 1986:227.
48. See note 16, Preves 1999.
49. These concerns were expressed by physicians present at the November 2000 meeting of the North American Task Force on Intersexuality at Columbia University in New York.