Parental choice on normalising cosmetic genital surgeryBMJ 2015; 351 doi: https://doi.org/10.1136/bmj.h5124 (Published 28 September 2015) Cite this as: BMJ 2015;351:h5124
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The editorial by Liao et al and subsequent responses highlight the ongoing clashes of opinion among various clinician specialists and people who live with diverse genitalia. Although the process of gender assignment is based today on more than genital appearance, it risks underestimating the uncertainties of each child’s future gender identity. Recent scholarship using mixed methodologies demonstrates that 25% of adults with diverse sex development identify and live in ways that defy simple “male vs. female” categorization(1). Even in the hands of the most dedicated clinicians, research and care that aims to emphasize functional and psychosocial outcomes does not always incorporate this reality. A non-medicalized (2) approach to education that promotes parents’ acceptance of natural variation is sorely needed to change families’ understanding of their options as either doing surgery or “doing nothing.”
Clinician and family perceptions of the availability and adequacy of psychosocial support remain at odds. Although psychological support was offered to all new patients in every clinic in one European study (3), another study found that while many parents felt a strong need for psychological support, half felt the support they received was inadequate. (4) This does not imply that offering clinical psychological support is a token gesture. It does indicate a need to shift the energy of researchers toward development of meaningful, nonsurgical interventions.
In addition to such simple measures as having a team member reach out to families periodically, peer support is an inexpensive means to promote acceptance and integration of DSD into family life. Peer support groups view their role as complementary to clinical services and are eager to create partnerships with clinicians. (5) Support coming from those who have “walked the walk” is highly valued by families who often feel isolated. Seasoned parents with well-developed coping skills can help families develop confidence and cultivate parenting strategies that support recognition of children’s autonomy and right to make their own choices.
Educating parents with standardized information is ideally part of routine care from the time of diagnosis. Assimilation of complicated information takes time and repetition. Objective assessment of parents’ comprehension is vital given the recent alarming finding that 40% of parents reported they did not completely understand their child’s diagnosis.(4) Balanced education includes disclosure of relevant medical and social controversies. Families should be made aware of legislative changes and human rights statements to avoid catastrophic scenarios in which older children accuse parents who made irreversible treatment decisions of ignoring information that was widely available at the time.
As a physician who is also a parent of adults with reproductive difference, I know that clinicians, advocates, families and patients of all ages share a goal of promoting the health, happiness, and resiliency of people born with unexpected sex characteristics. If there is a secret to raising healthy children, it is to accept and focus on what they are, instead of what they’re not. Changes happening everywhere challenge us reimagine intersex, not as disease, but as a way of living in the world. It is time for clinicians and families to develop a mutual understanding that “our diversity – the differences between our experiences and perspectives, as well as the shapes of our bodies – is something that we should celebrate and protect, in all its forms.”(6)
Arlene Baratz MD
Board of directors, family and medical adviser
Androgen Insensitivity Syndrome- Differences of Sex Development Support Group
Advocates for Informed Choice
Temple University School of Medicine
Allegheny Health Network
Department of radiology
312 East North Avenue
Pittsburgh PA 15241 USA
1. Schweizer K, Brunner F, Handford C, Richter-Appelt H. Gender experience and satisfaction with gender allocation in adults with diverse intersex conditions (divergences of sex development, DSD). Psychology & Sexuality. 2013;5(1):56-82. doi: 10.1080/19419899.2013.831216.
2. Streuli JC, Vayena E, Cavicchia-Balmer Y, Huber J. Shaping parents: impact of contrasting professional counseling on parents' decision making for children with disorders of sex development. The journal of sexual medicine. 2013;10(8):1953-60. doi: 10.1111/jsm.12214. PubMed PMID: 23742202.
3. Pasterski V, Prentice P, Hughes IA. Consequences of the Chicago consensus on disorders of sex development (DSD): current practices in Europe. Archives of disease in childhood. 2010;95(8):618-23. doi: 10.1136/adc.2009.163840. PubMed PMID: 19773218.
4. Bennecke E, Werner-Rosen K, Thyen U, Kleinemeier E, Lux A, Jürgensen M, et al. Subjective need for psychological support (PsySupp) in parents of children and adolescents with disorders of sex development (dsd). European Journal of Pediatrics. 2015. doi: 10.1007/s00431-015-2530-8.
5. Baratz AB, Sharp MK, Sandberg DE. Disorders of sex development peer support. Endocrine development. 2014;27 (Hiort O, Ahmed SF (eds): Understanding Differences and Disorders of Sex Development (DSD). ):99-112. Epub 2014/09/24. doi: 10.1159/000363634. PubMed PMID: 25247648.
6. United Nations Office of the High Commissioner for Human Rights. Opening remarks by Zeid Ra'ad Al Hussein, United Nations High Commissioner for Human Rights at the Expert meeting on ending human rights violations against intersex persons http://www.ohchr.org/EN/NewsEvents/Pages/DisplayNews.aspx?NewsID=16431&L... [cited 10/11/2015].
Competing interests: No competing interests
As a group of paediatric endocrinologists who care for children with a range of life-long genetic and hormonal conditions that present in early life, we are often faced with children with atypical genitalia in whom a condition broadly grouped as a “disorder of sex development” is suspected. Within this context, we were disappointed by the recent editorial by Liao et al (1) and feel well placed to address the erroneous assumptions that have been stated.
The authors have relied on the contents of a review article published 25 years ago to highlight the apparent priority given by ‘paediatricians’ to penile size as the determinant of sex assignment. Much has changed for the better in the interim, particularly recognising the complexity of the decision-making which needs a multi-disciplinary holistic approach and which totally involves and supports the parents. Although we are certain that the authors know this, we highlight the recent report from the International DSD Registry as an example of this change in practice (2) and we refer the authors to the UK DSD Guidance originally published in 2011 and then revised in 2015 and which was endorsed by several professional societies (3). In addition, the authors are not consistent in their argument. They refer to the penis as the focus of their case, yet then rely on their own historical studies on outcome in females with congenital adrenal hyperplasia (CAH) who have had normalising cosmetic surgery. Thus, we are puzzled as to what studies in females with CAH have to to do with boys with small penises.
Surgical techniques do change over time, not only in this area of practice, but across the whole of medicine. Indeed, it would be worrying if changes do not occur. Although in the past a great deal of emphasis has been placed on surgical interventions that have been aimed at aligning the appearance of the genitalia with the sex of rearing, it is important to highlight that practice has changed considerably, with a greater emphasis being placed on consideration of functional and psychosocial outcomes rather than simply cosmetic appearance. So it is rather misleading of the authors to state that ‘paediatricians’ are asking for parents to opt for experimental surgery on their children without any supporting evidence. In fact, we are very concerned that several statements by the authors do not refer to the source of the evidence. What do the authors mean that 'parents are not given sufficient time to appreciate their child etc'. Do they not recognise the encouraging development of truly MDTs for the management of DSD whose members practice the aspects that the authors allege are lacking? Whilst we agree that there is a need for more support for the new parent, stating that current service provision is merely a token gesture of psychological support is an affront to the increasing numbers of child clinical psychologists now becoming key members of neonatal teams as well as the DSD team at major centres across the UK.
The general reader unfamiliar with the complexities of DSD management will take the view from this editorial that paediatricians have been obdurate and one-dimensional in their approach to the care of the child suspected of having a DSD. On the contrary, paediatricians, together with their colleagues in the MDT have been at the centre of change. Initiatives such as the Chicago Consensus on DSD, the EU- funded EuroDSD and DSDlife projects, the MRC-funded International DSD Registry, the UK DSD Guidance, the biennial International DSD meeting, the Scottish Audit of Atypical Genitalia, the EU COST action DSDnet and the DSD Working Group of the European Society for Paediatric Endocrinology would not have been possible without the drive of paediatricians. Paediatricians have also been at the forefront of helping and advising support groups such as AISSG and Living With CAH and developing web resources such as dsdfamilies.org. In this vein, the recent support offered by the NIHR-RD TRC and the Chief Scientist Office of Scotland for the development of CAH-UK, a consortium of paediatric endocrinologists with an interest in the care of children with CAH from several tertiary paediatric endocrine centres is additional evidence of the activity in this area. The authors know of most, if not all, of these innovative activities but have failed to recognise these contributions.
By submitting this riposte, we as ‘paediatricians’ hope to assist the generalist in receiving a balanced view on this complex area of medical practice.
S. Faisal Ahmed, Samson Gemmell Chair of Child Health, University of Glasgow
Carlo Acerini, Senior Lecturer, University of Cambridge
Tim Cheetham, Senior Lecturer, University of Newcastle
Justin Davies, Consultant in Paediatric Endocrinology, Southampton University Hospitals Trust
Ieuan A. Hughes, Emeritus Professor of Paediatrics, University of Cambridge
Jeremy Kirk, Consultant in Paediatric Endocrinology, Birmingham Children’s Hospital NHS Trust
Nils Krone, Reader in Paediatric Endocrinology, University of Sheffield
1. Liao LM, Wood D, Creighton SM. Parental choice on normalising cosmetic genital surgery. BMJ. 2015 Sep 28;351:h5124. doi: 10.1136/bmj.h5124.
2. Kolesinska Z, Ahmed SF, Niedziela M, Bryce J, Molinska-Glura M, Rodie M, Jiang J, Sinnott RO, Hughes IA, Darendeliler F, Hiort O, van der Zwan Y, Cools M, Guran T, Holterhus PM, Bertelloni S, Lisa L, Arlt W, Krone N, Ellaithi M, Balsamo A, Mazen I, Nordenstrom A, Lachlan K, Alkhawari M, Chatelain P, Weintrob N. Changes over time in sex assignment for disorders of sex development. Pediatrics. 2014;134:710-5.
3. Ahmed SF, Achermann JC, Arlt W, Balen A, Conway G, Edwards Z, Elford S, Hughes IA, Izatt L, Krone N, Miles H, O'Toole S, Perry L, Sanders C, Simmonds M, Watt A, Willis D. Society for Endocrinology UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development (Revised 2015). Clin Endocrinol (Oxf). 2015 Aug 13. doi: 10.1111/cen.12857.
Competing interests: No competing interests
The BMJ editorial is a welcome effort, both for it's honesty, and it's willingness to acknowledge that currently practiced intersex protocols are no longer a legitimate pathway to continue following in the coming years.
The narrative of pre-emptive surgical and other interventions sanctioned by clinical protocols has been a long one enacted over many decades now, yet has to be viewed against a backdrop that increasingly sees those procedures as human rights abuses - however well intentioned they may be intended.
The admission that individuals continue to be assigned female because protocols deem it appropriate, in the face of mounting evidence that individuals are misassigned; something long known by intersex individuals themselves, but dismissed as anecdotal by clinicians - with all the trauma that can often encompass - is simply unacceptable in the 21st century.
Intersex advocates have long made the case that clinicians should be shaping their interventions to the needs and wants of the individual, not imposing decisions as a matter of protocol. A far greater degree of education for parents and wider society about intersex variation is long overdue: not to illustrate that difference is a disorder, but to help parents understand that differences is something that can be accepted.
All parents presented with the birth of an intersex child need far, far more time and support to adjust to that situation than protocols usually allow.
Sex, gender and sexuality are not immutable, nor do they always automatically follow the precepts of particular medical protocols. Infant genital mutilation is anathema in a society that has no truck with FGM elsewhere. It has to stop.
Individuals and parents should be given far greater access to peer support groups than currently, and affected intersex individuals given the right to engage on their terms with clinicians. If indeed they wish to engage at all.
Intersex variation and the manner in which it is dealt with by medical authority is a case of societal discomfiture, not medical need. This editorial is a welcome acknowledgement that currently accepted orthodoxies need to change. That offer is welcome.
Competing interests: No competing interests
Liao, Wood and Creighton make timely and helpful suggestions to Paediatric services managing infants and children affected by Disorders of Sex Development (DSD). In highlighting the UK variation in the provision of specialist psychological care which forms the backbone of a non-surgical pathway, they explain in part the persistence of the present UK practice; that of common cosmetic or normalising DSD surgery in infancy.
New parents of babies with atypical genital appearance are primed by early conversations, often with reassuring Paediatric or Surgical staff, to expect surgery to "correct", "normalise" or "repair". Parental investment in the medical (surgical) ability to undo or fix a 'problem' rarely shifts.
For parents to decline surgery aimed at either altering the appearance of the genitals in childhood or starting a surgical pathway to allow penetrative sexual intercourse in excess of 15 years hence must not be characterised as 'doing nothing'. Decisions for surgery are taken without the knowledge of whether this may be desired by the individual, but with the reality that function may be compromised as a result. Health services offering choice must provide the psychological care and intervention that might enable parents to respond to the challenge of raising a child with a visible difference and potential restrictions placed upon them. Children and families must be offered specialist psychological care that promotes resilience. Young people and adults may also require psychological support in developing their sexuality, sexual behaviour and sexual relationships incorporating their atypical bodies. Psychological care without irreversible surgery should be seen as an alternative active pathway for children and parents to allow them to meet the challenges posed by having a genital appearance different to expectation.
Competing interests: No competing interests
Liao, Wood, and Creighton clarify the consequences of the absence of a protocol to support alternatives to surgical normalisation of children with atypical sex anatomy. A robust protocol is long overdue. For too long, the “decision” presented to parents has been framed as a choice between active medical intervention (which often involves surgery) or “doing nothing,” what is presented also as a decision between “choosing normality” and “choosing abnormality.” Put in these terms, we may readily appreciate why parents continue to decide in favor of normalising surgeries even in the absence of evidence supporting their “success” in promoting psychosocial flourishing.
However, the promise the authors ascribe to the recent German legislation “to allow parents to leave the gender of their baby blank on the birth certificate” may be misplaced; a closer look at the legislation suggests it does not provide the genuine options parents should have.
It is true that news reports (appearing for example, in Der Spiegel in Germany; National Public Radio and The Wall Street Journal in the US; and BBC News in the UK) described the German legislation (effective November 1, 2013) as helpful in providing parents with a third “option.” This was particularly important in Germany, as parents have only one week to register their children as either male or female; it appears that before the recent law, parents relied on physicians to “fix” intersex children through the use of surgical and hormonal sex “normalisations” so as to enable them to register children’s births as required. Rather than a “blank,” however, parents would register their children as “X.” “X” is intended as a temporary category until such time as one or other sex is assigned.
The Swiss activist group Zwischengeschlect (“Between Genders”) suggests that prevailing understanding of the law and its promise get the legislation wrong, however. Rather than providing parents increased options, the law stipulates that parents of children with atypical sex anatomies are in fact prohibited from registering their children as “M” or “F;” the legislation furthermore mandates children’s entry “into the register of births without such specification.” If, from a physician's perspective, a child’s anatomy does not conform to the category of male or female, there is no option but to withhold the male or female labels given to “normal” children.
It does appear that the initial aim of the legislation was to decrease the likelihood of normalising surgeries – surgeries that have been criticized not only in the 2012 German Ethics Council report that inspired the legislative change, but also in numerous other reports including reports by the Swiss National Advisory Commission, and the United Nations Special Rapporteur on Torture and Other Cruel, Inhuman, or Degrading Treatment or Punishment. Paradoxically, the new legislation may have the net effect of promoting these surgeries so that children with atypical sex anatomy can be registered as “M” or “F”.
The 2012 German Ethics Council report recommended the category “other” as a way to defer sex assignment “until [individuals] have decided for themselves.” The new category was meant to protect newborns with atypical sex anatomy from harm resulting from children’s bodies being made to fit the categories of male or female. The Ethics Council condemned normalising interventions in strong terms: “Irreversible medical sex assignment measures in persons of ambiguous gender infringe the right to physical integrity, to preservation of sexual and gender identity, to an open future and often also to procreative freedom.” The German Ethics Council’s recommendation for a third category of sex assignment was not meant to be a quick fix, but was to be one among many measures to address the serious violations of human rights their report acknowledged and sought to rectify. But the effect of the German law bears little resemblance to the original proposal made by the Ethics Council.
Acknowledging the shortcomings of the German law (which, absent normalising interventions, requires children with atypical sex anatomy be set apart) is not to say that legislative reform has no role to play in ending ongoing violations of human rights, or cannot provide physicians guidance. But clearly legislative reform is not enough. Also in need of reform are the attitudes that make normalizing interventions seem imperative. Rather than see the problem in the bodies and identities of those with atypical sex anatomy, we should properly locate the problem in our responses, and thereby see the problem as a matter of culture. Physicians charged with the care of children with atypical sex anatomies have a responsibility to distinguish between conditions that require medical care (as indeed some conditions associated with atypical sex anatomies do), and those which call for the sort of alternative that Liao, Wood, and Creighton propose.
Competing interests: No competing interests