Journal of Pediatric Urology (2014) 10, 977e978
LETTER TO THE EDITOR
Response to ‘Re. Evidence regarding cosmetic and medically unnecessary surgery on infants’ In their response [1] to our initial review of the evidentiary deficit behind surgery on infants with differences in sex development (DSD) [2], Lee and Houk have made several counter-factual arguments against delaying cosmetic, medically unnecessary procedures. They begin by disparagingly dismissing calls for a moratorium on infant surgery as scholarly dogma, even though the UN’s Special Rapporteur and the Parliamentary Assembly of the Council of Europe have fully endorsed such a moratorium [2]. The World Health Organization has now joined those esteemed authorities, sharply criticizing medically unnecessary surgery on children with DSD and endorsing a ban on all procedures risking sterility in patients [3]. The sole evidentiary claim offered by Lee and Houk is that “preliminary” data about new surgical techniques warrant continuing early surgery [1], contradicting the Annecy Working Party’s own findings on the quality of life of patients and the balance of properly vetted evidence [4]. On the Working Party’s behalf, Lee and Houk wrote that the quality of life of surgically altered patients is a “very poorly researched area” [4]. Preliminary data e requiring a decade or more for validation [5] e cannot alter that conclusion. Indeed, the authors’ method suffers from the scientific flaw inherent in focus on surgical outcomes on infants: it precludes an ability to determine whether an affected child would want the surgery, much less know until adulthood whether the child suffers from the irreversible excision of genital and gonadal tissue. Lee and Houk assert, nevertheless, that delaying surgery “seems to represent an inappropriate form of social experimentation” because it leaves “children with genitalia that are neither male nor female, to later decide on gender and sexuality” [1]. That claim should give pause to everyone concerned with these surgeries. The Working Party has already warned that this theory is a belief, unsupported by data [6]. But this claim is much worse than a belief: it is an unambiguous declaration of surgical bias
animated by social fear e not evidence e lacking any mention whatsoever of the rights of the child. In our view, the authors are repeating this scientific error. In 1980, Lee endorsed the feminization of boys unless their penises were “sufficient” to “stand up to urinate . and, on the social standpoint, to avoid embarrassment when viewed by others” [7]. Decades later, Lee and Houk confessed unapologetically that “available data” did not support that practice [8]. The authors know full well that feminization and other surgeries that they have endorsed were not supported by scientific data [9e11]. They were social experiments gone horribly wrong, euphemized today as “poor outcomes” [1]. In our view, the authors should direct their charge of “social experimentation” toward early infant surgery, which is far too often defended on grounds of “social emergency” [12] and “social visibility” [5]. Five years ago, Lee and Houk wrote that ethical principles warrant “not removing gonadal and genital tissue”, to leave options open for the patient “when possible” [11]. It is always possible to delay medically unnecessary surgery. If the authors truly advocate individualized care, they will ensure that care by collaborating with individual patients to allow them to determine if surgery suits their individualized gender and sexual needs.
References [1] Lee P, Houk C. Re. ‘Evidence regarding cosmetic and medically unnecessary surgery on infants’. J Pediatr Urol 2013;10:7. [2] Diamond M, Garland J. Evidence regarding cosmetic and medically unnecessary surgery on infants. J Pediatr Urol 2013; 10:2e6. [3] World Health Organization. Eliminating forced, coercive and otherwise involuntary sterilization: an interagency statement. OHCHR, UN Women, UNAIDS, UNDP, UNFPA, UNICEF and WHO; 2014. [4] Schober J, Nordenstro ¨m A, Hoebeke P, Lee P, Houk C, Loijenga L, et al. Disorders of sex development: summaries of long-term outcome studies. J Pediatr Urol 2012;8:616e23. [5] Mouriquand P, Calderone A, Malone P, Frank JD, Hoebeke P. Editorial: the ESPU/SPU standpoint on the surgical management of disorders of sex development (DSD). J Pediatr Urol 2013;10:8e10. [6] Creighton S, Chernausek SD, Romao R, Ransley P, Salle JP. Timing and nature of reconstructive surgery for disorders of
http://dx.doi.org/10.1016/j.jpurol.2014.06.020 1477-5131/ª 2014 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
978
[7]
[8]
[9]
[10]
[11]
Letter to the Editor sex development e Introduction. J Ped Urol 2012 Nov;8(6): 602e10. Lee PA, Mazur T, Danish R, Amrhein J, Blizzard RM, Money J, et al. Micropenis: I. Criteria, etiologies and classifications. Johns Hopkins Med J 1980;146(4):156e63. Lee PA, Houk CP, Faisal SF, Hughes IA. Consensus statement on management of intersex disorders. Pediatrics 2006;118: e488e500. Houk C, Lee P. Approach to assigning gender in 46,XX congenital adrenal hyperplasia with male external genitalia: replacing dogmatism with pragmatism. J Clin Endocrinol Metab 2010;95(10):4501e8. Houk C, Damiani D, Lee PA. Choice of gender in 5a-reductase deficiency: a moving target. Pediatr Endocrinol Metab 2005; 18:339e45. Mieszczak J, Houk C, Lee PA. Assignment of the sex of rearing in the neonate with a disorder of sex development. Curr Opin Pediatr 2009;21:541e7.
[12] American Academy of Pediatrics. Evaluation of the newborn with developmental anomalies of the external genitalia. Pediatrics 2000;106(1):138e42.
Jameson Garland* Uppsala University, Faculty of Law, Uppsala, Sweden Milton Diamond John Burns School of Medicine, University of Hawaii, Honolulu, HI, USA *Corresponding author. E-mail address: [email protected] (J. Garland) 12 June 2014
LETTER TO THE EDITOR
Response to ‘Re. Evidence regarding cosmetic and medically unnecessary surgery on infants’ In their response [1] to our initial review of the evidentiary deficit behind surgery on infants with differences in sex development (DSD) [2], Lee and Houk have made several counter-factual arguments against delaying cosmetic, medically unnecessary procedures. They begin by disparagingly dismissing calls for a moratorium on infant surgery as scholarly dogma, even though the UN’s Special Rapporteur and the Parliamentary Assembly of the Council of Europe have fully endorsed such a moratorium [2]. The World Health Organization has now joined those esteemed authorities, sharply criticizing medically unnecessary surgery on children with DSD and endorsing a ban on all procedures risking sterility in patients [3]. The sole evidentiary claim offered by Lee and Houk is that “preliminary” data about new surgical techniques warrant continuing early surgery [1], contradicting the Annecy Working Party’s own findings on the quality of life of patients and the balance of properly vetted evidence [4]. On the Working Party’s behalf, Lee and Houk wrote that the quality of life of surgically altered patients is a “very poorly researched area” [4]. Preliminary data e requiring a decade or more for validation [5] e cannot alter that conclusion. Indeed, the authors’ method suffers from the scientific flaw inherent in focus on surgical outcomes on infants: it precludes an ability to determine whether an affected child would want the surgery, much less know until adulthood whether the child suffers from the irreversible excision of genital and gonadal tissue. Lee and Houk assert, nevertheless, that delaying surgery “seems to represent an inappropriate form of social experimentation” because it leaves “children with genitalia that are neither male nor female, to later decide on gender and sexuality” [1]. That claim should give pause to everyone concerned with these surgeries. The Working Party has already warned that this theory is a belief, unsupported by data [6]. But this claim is much worse than a belief: it is an unambiguous declaration of surgical bias
animated by social fear e not evidence e lacking any mention whatsoever of the rights of the child. In our view, the authors are repeating this scientific error. In 1980, Lee endorsed the feminization of boys unless their penises were “sufficient” to “stand up to urinate . and, on the social standpoint, to avoid embarrassment when viewed by others” [7]. Decades later, Lee and Houk confessed unapologetically that “available data” did not support that practice [8]. The authors know full well that feminization and other surgeries that they have endorsed were not supported by scientific data [9e11]. They were social experiments gone horribly wrong, euphemized today as “poor outcomes” [1]. In our view, the authors should direct their charge of “social experimentation” toward early infant surgery, which is far too often defended on grounds of “social emergency” [12] and “social visibility” [5]. Five years ago, Lee and Houk wrote that ethical principles warrant “not removing gonadal and genital tissue”, to leave options open for the patient “when possible” [11]. It is always possible to delay medically unnecessary surgery. If the authors truly advocate individualized care, they will ensure that care by collaborating with individual patients to allow them to determine if surgery suits their individualized gender and sexual needs.
References [1] Lee P, Houk C. Re. ‘Evidence regarding cosmetic and medically unnecessary surgery on infants’. J Pediatr Urol 2013;10:7. [2] Diamond M, Garland J. Evidence regarding cosmetic and medically unnecessary surgery on infants. J Pediatr Urol 2013; 10:2e6. [3] World Health Organization. Eliminating forced, coercive and otherwise involuntary sterilization: an interagency statement. OHCHR, UN Women, UNAIDS, UNDP, UNFPA, UNICEF and WHO; 2014. [4] Schober J, Nordenstro ¨m A, Hoebeke P, Lee P, Houk C, Loijenga L, et al. Disorders of sex development: summaries of long-term outcome studies. J Pediatr Urol 2012;8:616e23. [5] Mouriquand P, Calderone A, Malone P, Frank JD, Hoebeke P. Editorial: the ESPU/SPU standpoint on the surgical management of disorders of sex development (DSD). J Pediatr Urol 2013;10:8e10. [6] Creighton S, Chernausek SD, Romao R, Ransley P, Salle JP. Timing and nature of reconstructive surgery for disorders of
http://dx.doi.org/10.1016/j.jpurol.2014.06.020 1477-5131/ª 2014 Journal of Pediatric Urology Company. Published by Elsevier Ltd. All rights reserved.
978
[7]
[8]
[9]
[10]
[11]
Letter to the Editor sex development e Introduction. J Ped Urol 2012 Nov;8(6): 602e10. Lee PA, Mazur T, Danish R, Amrhein J, Blizzard RM, Money J, et al. Micropenis: I. Criteria, etiologies and classifications. Johns Hopkins Med J 1980;146(4):156e63. Lee PA, Houk CP, Faisal SF, Hughes IA. Consensus statement on management of intersex disorders. Pediatrics 2006;118: e488e500. Houk C, Lee P. Approach to assigning gender in 46,XX congenital adrenal hyperplasia with male external genitalia: replacing dogmatism with pragmatism. J Clin Endocrinol Metab 2010;95(10):4501e8. Houk C, Damiani D, Lee PA. Choice of gender in 5a-reductase deficiency: a moving target. Pediatr Endocrinol Metab 2005; 18:339e45. Mieszczak J, Houk C, Lee PA. Assignment of the sex of rearing in the neonate with a disorder of sex development. Curr Opin Pediatr 2009;21:541e7.
[12] American Academy of Pediatrics. Evaluation of the newborn with developmental anomalies of the external genitalia. Pediatrics 2000;106(1):138e42.
Jameson Garland* Uppsala University, Faculty of Law, Uppsala, Sweden Milton Diamond John Burns School of Medicine, University of Hawaii, Honolulu, HI, USA *Corresponding author. E-mail address: [email protected] (J. Garland) 12 June 2014
