Subject: Intersex Genital Mutilation in WA

Date: Thu, 28 Feb 2002 22:50:24 +0800
From: M Jones <hmpperth@cygnus.uwa.edu.au>
To: bob-kucera@dpc.wa.gov.au etc etc
 
OPEN LETTER TO:
Hon. Robert Kucera, APM
Minister for Health
10th Floor, Dumas House,
2 Havelock Street West Perth
Western Australia 6005
Ph: 9213 7000 Fax: 9213 7001

Dear Bob,

Firstly, I would like to congratulate the government for its pursuit of equality, evident in the Acts Amendment Bill currently before the Legislative Council.

From newspaper reports I have learnt that the government is drafting a bill to ban Female Genital Mutilation (FGM). The International Foundation for Androgynous Studies, which is based in Perth, would like to suggest that there should also be a ban, or at the very least a moratorium, on Intersex Genital Mutilation (IGM), and that enquiries should be made into the extent of this practice in WA hospitals.

FGM is done for no legitimate medical reason, is forced on young children, often causes life-long distress, suffering and medical complications, can cause infertility, and can have a devastating effect on whole extended families. In these ways it is exactly the same as IGM.

In very few cases of IGM is there any suggestion of a medical condition which needs surgery. As the mutilation carried out by surgeons is done ENTIRELY for cultural reasons, it is difficult to see how this can be considered any different from FGM.

There are serious doubts as to the long-term benefits of IGM, and there are many people who question the wisdom of choosing a baby's gender for it and then enforcing this choice without its consent or even knowledge. Most 'doctored' intersex people are never told they were not born clearly male or clearly female.

Please consider this quote from two gynaecologists in the attached document (Managing Intersex.html):

"Most vaginal surgery in childhood should be deferred

"For over 40 years doctors have been in the impossible situation of making momentous decisions for intersex children, without well founded scientific principles and with little more to guide them than a personal hunch that they were doing the "right thing for the child." Despite rapid advances in understanding sexual differentiation and increased accuracy of diagnosis, the clinical management of intersex has changed little. Recently the medical profession has been confronted by the powerfully critical voices of intersex consumer groups (www.cah.org.uk/; www.isna.org/; www.medhelp.org/www/ais). With a serious deficiency of any evidence base, emotive debates on ethics, and clinical concerns over the long term consequences of interventions, it is time to stand back and rethink every aspect of this management."

--Sarah Creighton, consultant gynaecologist, Elizabeth Garrett Anderson and Obstetric Hospital, University College London Hospitals, London WC1E 6DH and Catherine Minto, gynecology research fellow, Academic Unit of Obstetrics and Gynecology, University College London, London WC1E 6AU. Available at (URL will need to be put back together, or you may need to search the site for 'Creighton'): http://bmj.com/cgi/content/full/323/7324/1264?maxtoshow=&HITS=10&hits =10&RESULTFORMAT=&author1=Creighton&searchid=1014901673299_8223&stored_search=&FIRSTINDEX=0

There are two major unwarranted and unsubstantiated claims by doctors involved in IGM. 1) they believe they can decide which gender to assign someone, and 2) that there are only two choices---male and female.

All over the globe there are moves by concerned gynaecologists, paediatricians and intersex advocates to have surgery on intersex infants banned or placed under a moratorium. The call is for physicians to "first, do no harm", a medical precept which has plainly been ignored in this situation for decades. 0 to 18 month old babies are operated on under general anaesthetic, which would normally only happen if there was a medical emergency, because the risk of serious side effects and DEATH are usually considered too great if there is no medical emergency. But what is the medical emergency if a genetically female baby has a clitoris that's a little too long? Or if a genetically male baby has a micropenis?

In most cases the only problem is a social problem. No amount of mutilating surgery can fix that.

Some quotes from the ABC Radio National Health Report (25 Feb 2002), available at http://www.abc.net.au/rn/talks/8.30/helthrpt/stories/s490535.htm

Garry Warne (a leading pediatrician at the Royal Children's Hospital in Victoria):

"Well I remember hearing a story from one young woman, she was a single mother, the baby was born in a country hospital, and first of all they took the baby out of the room and didn't say anything to the mother about why they were whisking the baby away. So she was left there, thinking the worst, and then later on, some hours later, a doctor came back and tried to explain to her what was wrong and the doctor burst into tears because he didn't have the words for it. The mother actually felt compassion for the doctor, because at least, you know, the doctor was able to appreciate the difficulty of the situation so that she wasn't angry about that. But subsequently, a nurse brought the baby to the mother and she was relieved to find that it was only a genital problem, because she'd begun to think that either the baby had died or it had something dreadful like a cerebral haemorrhage and would be handicapped forever. So she was relieved to learn that it was only a problem of ambiguous genitalia."

This anecdote clearly illustrates how much more preoccupied with gender assignment medical staff can be, compared to the mothers, who love their babies however they are. I suspect that the social problem, which certainly does exist, is more likely to reside with the doctors and nurses. In particular, doctors as a group seem to have serious hang-ups about intersex people, whether babies or adults.

From the same radio programme:

Rae Fry (the presenter):

"Milton Diamond [University of Hawaii professor of anatomy and reproductive biology and winner of an international award for sex research], and a number of intersex patient advocacy groups in the United States, the United Kingdom, and Australia, have called for a moratorium on paediatric surgery unless it's needed for good medical reasons"

Milton Diamond:

"These are cosmetic surgeries, they're not medically needed....If you bring someone up as a boy, or you're bringing someone up as a girl, they simultaneously are learning the other gender as well. You're really learning both at the same time, and it makes the ability to switch or be neutral, easier when you're an adult....they have not been bad parents, this is a biological variation that occurs."

So it's no big deal if an arbitrary sex assignment is not made at infancy, because as an adolescent the person will be able to live as whichever gender they feel themselves to be. They don't need to be brought up from infancy as a male, or as a female, to later be able to live as a male or female. Diamond has much more advanced notions of sex and gender than many of his colleagues.

Rae Fry:

"The Royal Children's team [in Melbourne] thinks that parents have to decide for themselves what they tell people. They say that parents should be given full information about the child's condition, and told that not having surgery is a valid option... Whatever happens, they believe that good psychological and social support is crucial. And Sonia Grover believes that in some cases, it may be best to leave the question open. Boy or girl?"

IFAS believes it would almost always be best to leave the question open, not just in 'some' cases.

Bob, I reiterate the offer which Felicity Haynes has made, to have a meeting to discuss these issues.

Thanks,

(See below for suggested links)
--Margaret Jones, androgyne
MusB(WA), DipEd, LTCL, ATCL, AMusTCL, AMusA
Member: ANATS, ANCA, FAC, WAMTA
Associate Composer, Australian Music Centre
Executive Committee Member, International Foundation for Androgynous Studies (IFAS). http://ifas.org.au
Hovea Music Press,
PO Box 227,
Claremont,
Western Australia 6910
Mobile 0427 853 083;
Email: M Jones <hmpperth@cygnus.uwa.edu.au>
HoveaMusicPress.com; www.go.to/MJones

Suggested links for further information: http://ifas.org.au www.vicnet.net.au/~aissg/ (includes the stories of intersex people in their own words) http://home.vicnet.net.au/~cahsga/ http://www.isna.org/ http://www.aihw.gov.au/npsu/cm97.pdf (Australian National Perinatal statistics)

Alert me when: New articles cite this article Collections under which this article appears: Sexual and gender disorders BMJ 2001;323:1264-1265 ( 1 December )

Most vaginal surgery in childhood should be deferred

For over 40 years doctors have been in the impossible situation of making momentous decisions for intersex children, without well founded scientific principles and with little more to guide them than a personal hunch that they were doing the "right thing for the child." Despite rapid advances in understanding sexual differentiation and increased accuracy of diagnosis, the clinical management of intersex has changed little. Recently the medical profession has been confronted by the powerfully critical voices of intersex consumer groups (www.cah.org.uk/; www.isna.org/; www.medhelp.org/www/ais). With a serious deficiency of any evidence base, emotive debates on ethics, and clinical concerns over the long term consequences of interventions, it is time to stand back and rethink every aspect of this management.1-4

Intersex conditions consist of a blending or mix of the internal and external physical features usually classified as male or femalefor example, an infant with ambiguous genitalia or a woman with XY chromosomes. Actual prevalence figures are unknown, with population estimates of 0.1% to 2%, though figures can be distorted by varying definitions of intersex.5 When intersex is recognised in infancy, doctors decide if the child with an intersex condition is to be raised as a boy or a girl and they recommend surgical and hormonal treatment to reinforce the sex of rearing. Core to this process is a belief in a societal binary two gender system. In the 1950s-70s, John Money gained widespread acclaim for work analysing differentiation of gender identity with intersex subjects.6 He stated that to achieve a stable gender identity a child must have unambiguous genitalia and unequivocal parental assurance of the chosen gender. Extrapolated into clinical management, the accepted keys to successful outcome were believed to be an active policy of withholding any details of their condition from the child and early genital surgery, before 18 months of age.7 Hence the current intervention of genital surgery has focused on early cosmetic appearance of the genitals rather than later sexual function.

A paternalistic policy of withholding the diagnosis is still practised by some clinicians. No objective work has analysed the widespread effects of such non-disclosure, but the impact on individual patients has been eloquently described. 1 8 There are more than just medicolegal reasons for abandoning non-disclosure. Most patients eventually become aware of their diagnosis through a variety of waysfrom mortgage applications to television and magazine articles on intersex. Some articulate feelings of anger, distrust, and betrayal directed towards their doctors and families.9 Surely if a patient is going to learn the truth whatever happens, it would be more appropriate if they learnt it from their doctor and were given accurate information and appropriate psychological input. Policies of non-disclosure also prohibit access to genetic screening and the important option of peer support groups for shared learning and experiences. Once we accept that there is no place now for non-disclosure we can devote more research to appropriate ways of educating both the family and the patient, and how to tailor psychological support accordingly.

Genital surgery is one of the most controversial interventions in current intersex management. A large proportion of infants with ambiguous genitalia are raised as girls, and surgically feminising the genitalia usually involves a clitoral reduction and a vaginoplasty. In the absence of clinical trials and with minimal objective cohort studies providing data on outcomes on cosmetic, gender, social, or sexual function after this surgery, along with anecdotal evidence of dissatisfaction of adult patients with childhood surgery, both clinicians and parents face huge dilemmas. Current theories of gender development say that both prenatal factors (for example, testosterone) and postnatal factors, including the social environment, are important, and that genital appearance is less relevant.10 Clinicians, however, remain uneasy about gender development if the genitals remain uncorrected and are concerned over the possible psychological distress from bullying over different genital appearance. Recent work has shown that most children undergoing vaginoplasty will require another operation to permit use of tampons and sexual intercourse. 3 4 The vagina is non-essential and not even visible in childhood, and most vaginal surgery should be deferred.

Conversely the clitoris is visible in childhood. An erotically important sensory organ, both the clitoris and the clitoral hood are densely innervated.11 Most cosmetic clitoral surgery removes the paired clitoral corpora. The physiology of female orgasm, however, is poorly understood. It is only logical to consider that any surgery to the clitoris, which risks vascular, anatomical, or neurological compromise, could potentially alter sexual response. To date, published studies on outcomes of intersex clitoral surgery contain observer bias and non-objective assessment. None provides evidence for the assertion that adult clitoral sensation and sexual function remain undamaged by clitoral surgery.12 Indeed it would be expected that people with intersex conditions might suffer an increased incidence of sexual dysfunction owing to the nature of their condition and the many psychological factors that impact on sexual function. Unravelling the complex interplay between surgery and psychology to understand their impact on adult sexual function remains the unconquered challenge. In the meantime, any decision regarding clitoral surgery must be taken with the knowledge of potential damage.

We need to rethink our approach to the management of intersex conditions. We must abandon policies of non-disclosure and manage patients within a multidisciplinary team. Long term follow up studies of adults with intersex conditions are crucial. However, such studies can be done only with the equal involvement of people with these conditions and of peer support groups and the cooperation of all clinicians managing intersex. It is time to create a major intersex research partnership to begin tackling these questions and move forwards towards enlightened and patient empowered care.

Sarah Creighton, consultant gynaecologist.

Elizabeth Garrett Anderson and Obstetric Hospital, University College London Hospitals, London WC1E 6DH

Catherine Minto, gynaecology research fellow.

Academic Unit of Obstetrics and Gynaecology, University College London, London WC1E 6AU

1. Groveman SA. Sex, lies and androgen insensitivity syndrome. Can Med Assoc J 1996; 154: 1827-1834[Medline].

2. Lightfoot-Klein H, Chase C, Hammond T, Goldman R. Genital surgery on children below the age of consent. In: Szuchman LT, Muscarella F, eds. Psychological perspectives on human sexuality. Toronto, ON: Wiley, 2000:440-479.

3. Alizai NK, Thomas DFM, Lilford RJ, Batchelor GG, Johnson F. Feminizing genitoplasty for adrenal hyperplasia: what happens at puberty. J Urol 1999; 161: 1588-1591[Medline].

4. Creighton SM, Minto CL, Steele SJ. Objective cosmetic and anatomical outcomes at adolescence of feminising surgery for ambiguous genitalia done in childhood. Lancet 2001; 358: 124-125[Medline].

5. Blackless M, Charuvastra A, Derryck A, Fausto-Sterling A, Lauzanne K, Lee E. How sexually dimorphic are we? Review and synthesis. Am J Hum Biol 2000; 12: 151-166.

6. Money J, Ehrhardt AA. Man and woman, boy and girl. Baltimore: Johns Hopkins University Press, 1972.

7. Edmonds DK. Intersexuality. In: Edmonds DK, ed. Dewhurst's practical paediatric and adolescent gynaecology. London: Butterworths, 1989:6-26.

8. Once a dark secret. BMJ 1994; 308: 542[Full Text].

9. Personal stories. www.medhelp.org/www/ais/ (accessed 24 Sep 2001).

10. Zucker KJ. Intersexuality and gender identity differentiation. Annu Rev Sex Res 1999; 10: 1-69[Medline].

11. Lundberg PO. Physiology of female sexual function and effect of neurologic disease. In: Fowler CJ, ed. Neurology of bladder, bowel and sexual dysfunction. Woburn, MA: Butterworth Heinemann, 1999:33-46.

12. Glassberg KI. Gender assignment and the pediatric urologist [editorial; comment]. J Urol 1999; 161: 1308-1310[Medline].

© BMJ 2001

Below is the full text of a reply to an email I sent to our state health minister calling for a ban or a moratorium on intersex genital mutilation (ambit claim??)

I'd guess the reply was written by a doctor on Kucera's behalf (arrived 21 March 2002). The use of the term 'ambiguous genitalia' sets the scene for doctors to categorise such infants as abnormal (another word also used below), instead of diverse. Then we get 'anatomical defects', like it's right out of the bible that a male should have such and such and a female should have such and such. If parents are spoken to by doctors using this kind of negative terminology, what hope has the infant got that its genitals will be left alone?

But my heart really sinks with the 'boys with the toys' attitude to improved surgical techniques.

He says "Obviously, careful assessment has to be made by the team consisting of a Neonatologist, Endocrinologist and Paediatric Urologist, and together with careful counselling, a final guideline to the sex of rearing will be reached," but doesn't identify who is to do the counselling. Not IFAS or AISSG I bet.

So, this is a part of medical practice that isn't going to be legislated on. That's predictable. I had hoped that the apparently growing push within the medical profession to re-think IGM would lead somewhere useful, but now I wonder if there is another push happening there to develop better surgical techniques, thus pushing to one side the debate over whether surgery should be done at all. But if a thing ain't broke, why fix it?

Here's the letter.

--Margaret Jones, IFAS

Dear Ms Jones

Thank you for your e-mail of 28 February 2002 regarding the issue of Intersex Genital Mutilation in Western Australia.

The Paediatric Surgeons and Paediatric Endocrinologists involved in the care of treating children born with ambiguous genitalia are well aware of the changing concepts that are occurring in the management of these children. These recent changes have been discussed at forums and meetings. Indeed, at the November 2001 meeting of the Paediatric Urology Club of Australia in Melbourne, a whole session was devoted to the management of these abnormalities in the light of some more recent papers, propositions and feeling expressed by various interest groups.

Having said this, there is a greater understanding of the anatomical defects today. The techniques of surgical intervention and hormonal management available today are greatly refined compared to that which was available in past decades. The management of this abnormality is changing rapidly, particularly in the field of endocrinological understanding of the pathways of some of the causes of these defects and in their hormone management.

It is terribly important to understand that each baby born with ambiguous genitalia is different and the management has to be individualised to the patient. Obviously, careful assessment has to be made by the team consisting of a Neonatologist, Endocrinologist and Paediatric Urologist, and together with careful counselling, a final guideline to the sex of rearing will be reached. However, the final decision must remain with the parents and therefore it is important that their decision not be influenced by any legislation. This is a very important and stressful time in the lives of the parents of such a baby, and they must not be constrained by any acts of Parliament in coming to their decision as to how they wish their child to be treated.

Thank you for contacting me regarding this sensitive issue and giving me the opportunity to consider the issues involved. Mr Dave Fallon, Conciliation Officer, Customer Service Unit, KEMH/PMH will contact you in the near future, should this not occur, please contact Dave on telephone (08) 9340 1467.

Yours sincerely

Bob Kucera APM MLA
MINISTER FOR HEALTH

Cc: AIS support Group Australia