Medical Ethics and Practice

Notes on Intersexuality and Ethical Issues Raised by the Standard Protocol of Treatment for Intersexed Infants and Children

Introduction:

1. I am intersexed, born, like most of the people born with bodies which are such that intersexuality has a significant impact on their lives, with ambiguous genitalia. In 1953, when I was born, what became the standard protocol of treatment for intersexed infants was fortunately not in place. In consequence, I was spared the imposition of the “disambiguation surgery” which became standard in many parts of the world just a few years later. Intersexuality is often pathologised and people like myself who are intersexed are often seen as pathological specimens. There is something I must make clear at the outset. I, and others like me, are first and foremost persons possessed of intrinsic dignity. We are not specimens of any pathology, and I stand before you as a person in the full-blown Lockean sense, a thinking, intelligent being no less possessed of reason and reflection than yourselves, indubitably capable of considering myself as myself, the same thinking thing, in different times and places. The fact that I was born intersexed has sometimes occasioned discomfort given stigma connected with it and the reaction of some institutions to the discovery that I am intersexed. It seems to me that it is the fundamentally irrational prejudice of such institutions and people which is pathological and requires urgent treatment, not the way my body is from birth.

2. South Africa is sometimes said to have the highest prevalence of intersexuality in the world, but region-figures appear to be hard to obtain. Anne Fausto-Sterling and some of her students have done an estimate for the United States. The Fausto-Sterling study suggests that almost one in fifty infants is intersexed, born with atypical congenital physical sexual differentiation, albeit to a degree which does not have a major impact on the lives of most of these infants. In between one in a thousand and one in five hundred live births, the degree has a major impact on lives. Extrapolating from the figure of one in five hundred, this suggests that perhaps 90 000 South Africans or more are intersexed “big time”.

3. In what follows, I do not propose to focus upon the prevalence. Although I will touch on some features of certain specific syndromes, I do not intend to make this the major focus of what I have to say, not least because I am a professional analytical philosopher by training rather than a medical professional. What I propose to do is to sketch the standard protocol of treatment, explain its rationale, and give some account of evidence which had brought its empirical basis radically into question. I shall then attempt to interrogate ethical issues raised by the standard protocol and to tease out some implications.

Dichotomous Concepts Questioned:

4. The birth of infants with phenotypically intersexed bodies appears to occasion shock, both among members of the general public and among medical professionals, which actually has little to do with the actual prevalence or with any actual risk to the health and life of the infants in question. This is surely because the birth and existence of people like myself brings into question a basic assumption with deep roots in our networks of concepts which undergird many of our languages.

5. What might be called sex in the sense of “physical sex” or “biological sex”, as distinct from sexual activity, sexual orientation or gender-identity, is assumed to be a dichotomy. That is to say, it is assumed to come in two distinct types, male and female, and the two constitute a dichotomous system in that there is no in-between. A person is assumed physically to be either determinately and unequivocally male or determinately and unequivocally female. Our legal categories and a whole host of social institutions are also predicated on this dichotomous assumption. The birth of people like me constitutes a fundamental challenge to this dichotomous conception. There are two check-boxes, as it were, male and female, and yet our bodies do not fit neatly into either check-box.

6. Like the rotation of the planets around the sun which so embarrassed the Curia of the Roman Catholic Church in the time of Galileo, the birth of a significant number of infants whose physical sexual differentiation is atypical and inherently ambiguous cannot be wished away. It suggests that biological sex is a continuum rather than a dichotomy, and that our binary taxonomy lacks the complexity needed to do justice to what actually is to be found in nature.

The Standard Protocol of Treatment:

7. It has long been standard practice to treat the birth of infants with ambiguous genitalia as an emergency, and to impose “disambiguation” surgery as soon as is possible. As an American surgeon once said, “it is easier to dig a hole than to build a pole”. Although this conception of the vagina as a hole is rather a poor one, surgically it is easier to feminise genitalia than it is surgically to construct male organs which do all that male organs are expected to do. Far and away most infants and children born intersexed who are subjected to genital surgery are therefore assigned as female.

8. The theory which undergirds the standard practice is based largely on the work of Professor John Money, who once ran the Psychohormonal Research Unit at John Hopkins, Baltimore, in the United States. On Money’s account, sexual identity is rather like a language, something which is acquired in infancy through nurture rather than coming hard-wired from birth. Money talks of “lovemaps” which are learnt in the course of the development of infants. In sexual terms, a neonate is a tabula rasa. Given appropriate rearing, the sex of rearing will “take” and may even be changed at need, provided that it is done within the window-period of around the first two years of an infant’s life. It is crucial, however, that the parents be convinced that the gender of rearing gives expression to the “true sex” of their child, and the said child must be provided with gender-appropriate genitalia. Applied to intersexed infants born with ambiguous genitalia, this suggests the urgent need for genital surgery as soon as possible. As matters currently stand, application of this theory also means that many infants born karyotypically male with micropenis are to be reassigned surgically as female on the grounds that such infants should not be allowed to grow up with inadequate male genitalia.

9. John Money’s theories found strong empirical support in the form of the so-called “John/Joan case”, which became part of the standard canon of paediatrics in many text-books. “John” was one of a pair of twins who were genetically identical and who were born karyotypically and phenotypically male. In consequence of the development of phimosis, they were referred to hospital for circumcision. The operation on “John”, which was performed by means of cauterisation, was very badly botched. The entire penis was ablated. “John’s” parents happened upon a television programme about the work of John Money at John Hopkins, and they got in touch with him. In accordance with John Money’s theories, “John” was reassigned surgically as “Joan”. John Money was delighted to have a pair of twins who were genetically identical to study in connection with his hypotheses, saw the twins regularly and wrote his findings up. He reported that things were working out exactly as his theory predicted that it would, and that young “Joan” was developing into a bonnie young lass. On the basis of his reports, which made it into many text-books, infants born with ambiguous genitalia were subjected to genital surgery. In South Africa, the “John/Joan” case was used as the warrant for the surgical reassignment as female of toddlers whose genitalia had been removed in muti mutilations and in other cases in which male genitalia had been ablated or damaged irreparably.

10. In regard to infants born with ambiguous genitalia, the standard protocol of treatment based on Money’s work boiled down to a process of differentiation based on a tape-measure test in clinical practice. Clitoris and penis are homologous structures, developing as they do from the same bundle of foetal tissue. A neonatal phallus of up to 0.9 cm in stretched length was to be regarded as an acceptable clitoris. Natal sex was to be classified as female and such infants would not generally be deemed to require genital surgery. Neonatal phalluses with a stretched length greater than 2.5 cm were to lead to classification of natal sex as male, and no surgery would generally be deemed necessary unless female fertility was viable. Neonatal phalluses between 0.9 cm and 2.5 cm in length were to be regarded as enlarged clitori and were to be removed or reduced or removed. Classification of natal sex would be as female. When marked phallic virilisation coexisted with viable female fertility, female fertility was to be favoured and preserved in practice. What was regarded as a monstrously enlarged clitoris would be removed or reduced to acceptable proportions. The illustration below, which shows a “Phall-O-Meter” designed by an intersexed acquaintance of mine in the United States of America who was subjected to surgery, Kiira Triea, provides a graphic illustration of this set of criteria and was intended to drive home the fact that many intersexed people subjected to genital surgery in terms of these criteria find them grotesque and crude.

11. In the previous paragraph I have alluded to one caveat to the “tape measure” criterion, a caveat with which John Money has expressed discomfort in some of his work. In terms of the standard protocol, potential for female fertility is always to be preserved, however extensive the virilisation of the phallic structure. It follows from this that infants of XX-karyotype who are very considerably virilised by congenital adrenal hyperplasia (CAH) are generally classified as female and subjected to excision or reduction of the phallus. Notwithstanding Money’s discomfort with the practice in certain contexts, it could claim support from his theories. Given that rearing in a particular gender-role would “take” within the window-period provided that the genitalia were made gender-appropriate, the gender-identity laid down “surgically corrected” CAH-infants whose genitalia had been virilised in utero would be female.

Actual Outcome in the “John / Joan” Case

12. As has been noted, the outcome of the “John / Joan” case as reported in a host of textbooks, came to be seen as a vindication of John Money’s theories and of the standard protocol of treatment. It is now known that the actual outcome was not at all what it was claimed to have been. “Joan” did not take to her gender of assignment at all. She was, if anything, perceived as more masculine than her decidedly masculine identical twin brother, disliked stereotypical female dress, toys and play, and was profoundly unhappy with life as a girl. Both she and her brother developed a strong antipathy towards John Money and towards periodic sessions with him. As a young adolescent, “Joan” decided to stop living as female. On the advice of a psychiatrist, her father told her about the botched circumcision and about what had been done. “Joan” became “John” again, and contracted marriage as a young man. The fact that the outcome of this vaunted case was in fact the direct opposite of what had been reported was made known in 1997 in a paper by Milton Diamond and Keith Sigmundson. Milton Diamond is an academic expert on intersexuality who has questioned John Money’s theories, while Keith Sigmundson is the psychiatrist who treated “Joan” as an adolescent at the time of his decision no longer to live as female. Thus, far from providing empirical support for the veracity of John Money’s theories, the outcome of what had been claimed to be its main empirical support told against the theories.

13. As has been noted, the Money paradigm has sometimes been followed in South Africa in the cases of toddlers who have been the victims of “muti” mutilations. Perhaps the most prominent case in point is that involving a child described in the press by the pseudonym “Little Lucky”. Little Lucky, born male, was the victim of “muti” mutilation, and was reassigned as female at Chris Hani Baragwanath Hospital at an age at which the new gender of rearing could be expected to “take” according to John Money’s theories. I recall an optimistic article about the case in Time magazine when I still lived in the United Kingdom. The outcome, however, was much the same as that in the “John/Joan” case: the gender of rearing simply did not take. I understand that there are a number of other such cases.

14. For some years prior to the release of Diamond’s and Sigmundson’s paper, the efficacy of the standard protocol of treatment had been challenged by a growing number of intersexed activists in the United States and Canada in particular. The intersex advocacy movement was founded by an intersexed person in the United States, Cheryl Chase. Ms Chase was subjected to genital surgery as an infant and throughout childhood, but was told to keep this secret and the fact that she was intersexed was hidden from her. In consequence, she grew up with a sense that something had been shamefully wrong with her body when she was born, something which had required repeated bouts of surgery on her genitals, but she had no real idea what it was. As a young adult, she had to battle long and hard (as do many intersexed activists) to get sight of her medical records and to learn the truth about the nature of her own body. Learning that she was intersexed and that she was originally baptised as a boy precipitated her into breakdown. She emerged from this determined to end the stigmatisation, shame, secrecy and isolation which affects intersexed people, and founded the Intersex Society of North America (ISNA). Through ISNA, a number of adults who had been subjected to genital surgery as infants and children by virtue of the standard protocol of practice sought to tell professionals and the public at large that their experience suggested that the imposition of genital surgery quite simply did not work. Many members of the medical fraternity tended to reject them as mad zealots and argued that their stories had absolutely no value as evidence. The standard line was that, like the silent “moral majority” to whom certain politicians refer but which remains largely unseen, there were a large number of intersexed adults out there who had had surgery and who were perfectly happy with the results. The invisibility and silence of this satisfied majority was itself evidence that the standard protocol, involving surgery, secrecy and economies with the truth in relation to intersexed patients and their parents, worked. When pressed, medical professionals would admit that there was practically nothing in the way of long-term follows-up of the quality of life of intersexed people subjected to this regime, but this did not persuade them to take what intersexed activists were saying seriously. Follow-up has tended to focus on genital appearance rather than on long-term the impact on those subjected to the surgery. The promulgation of Diamond’s and Sigmundson’s paper changed this, initiating what seems to be a sea-change in the making. In bringing the standard protocol of treatment and its theoretical base radically into question, the revelations in the “John/Joan” case also persuaded many medical professionals, who refused in the past to take note of what ISNA activists said about their own experience, to sit up, to listen and to learn.

15. Following the publication in 1997 of Diamond’s and Sigmundson’s paper about the “John/Joan” case, Diamond and Sigmundson were challenged to formulate an alternative to the standard protocol of treatment. Their response to that challenge is an article which appeared in later 1997. Milton Diamond circulated the article in draft to many intersexed activists for comment. I was one of those who offered comments. The article as published reflects the comments received, and Diamond’s and Sigmundson’s suggestions enjoy wide endorsement among intersexed activists. They provide diagnosis-specific rules of thumb for optimal gender of rearing in particular cases as well as advice about the timing of interventions, but note that even the most judicious best guess may turn out to be the wrong one in such cases and urge medical professionals not to impose genital surgery unless, and only to the extent that, it is necessary for the preservation of physical life and health. Diamond and Sigmundson emphasise the need for widespread and systematic long-term follow-up in order to establish an adequate empirical basis for interrogation of protocols of treatment.

16. Looked at in broad terms, Diamond’s and Sigmundson’s recommendations are similar to earlier recommendations made by ISNA. In summary, these were that decisions be taken concerning optimal sex of rearing as male or female based on a “best guess”. Few intersexed activists consider rearing as “third sex” a realistic option at all, though it would be a legitimate but very difficult option for an intersexed adult. Genital surgery is not to be imposed unless the preservation of life and physical health demands it, and it should be limited to what is indeed necessary for preservation of life and physical health. Should a person make an informed decision to seek genital surgery of some kind once he or she has reached an age of understanding, there is no problem about performing the surgery. Unless surgical intervention is required to preserve life or health, future choices should not be pre-empted. ISNA is also at pains to emphasise that best guesses at optimal gender of rearing sometimes turn out to be wrong, and that a willingness to recognise this is of crucial importance. The ISNA document opposes the regime of secrecy, as do the Diamond and Sigmundson guidelines. It notes that intersexed activists have found that peer-contact and peer-support are of crucial importance for people who are intersexed. All of this is in fact fairly conservative: ISNA’s call to doctors not to pre-empt choice by imposing surgery is, in effect, a call not to resort to radical and unproven measures. It is informed by the prime imperative of the Hippocratic Oath, that harm not be done. Strangely, this prudent counsel of caution was excoriated as radical by supporters of the standard protocol of treatment before that protocol of treatment was shown to be without empirical support.

17. What I have said thus far sets the question of the standard protocol of treatment for intersexed infants and children in historical context, as it were. In what follows, I will attempt to interrogate ethical issues arising from it.

A Simple Account of the Principle of Double Effect

18. An ethical paradigm which is often applied to “difficult cases” in medical ethics and in other domains is what is called the principle of double effect. I shall seek to explain this principle, and shall apply it to the treatment of intersexed infants and children.

19. The best way in is perhaps to take a workaday example which is almost banal. One of the first things I and most other people do is to get dressed. We do this for comfort – to minimise direct bodily exposure to cold or to heat, to rain and wind or to intense sunlight, and to protect the soles of our feet from hard and sharp objects. This protection and the enhancement of our appearance, is what we intend directly to achieve by wearing clothes. The action we take – wearing clothes – is the means to this directly intended end. The wearing of clothes has another effect: inevitably, clothes which are worn wear out over time. Fabrics fade, become abraded and eventually tear, and shoes and sandals become dilapidated. The wearing out of our clothes does not come as a surprise: it is a foreseen consequence of the fact that we wear our clothes. For all that it is a foreseen consequence of wearing clothes, it is not one which we intend by wearing our clothes, unless there happens to be a fashion for “distressed jeans” and the like and we become devoted followers of that fashion. In the latter case, the wearing out of the jeans is directly intended: the devoted follower of fashion wears new jeans, and perhaps rubs them against abrasive objects while wearing them, in order to wear them out to the extent which is fashionable. Generally, however, we do not see the wearing out of our clothes as a good thing. Were we able to wear our clothes without wearing them out, we would do so. Unfortunately, entropy reigns and our clothes wear out when we wear them, will we or nil we.

20. What we have in the trite sartorial example above are a number of elements:

• a. Something good which is sought, namely, protection from the elements and aesthetic enhancement of personal appearance;
• b. The direct intention to achieve the above;
• c. A means whereby it is intended to achieve the good which is sought; and
• d. A foreseen but unintended negative consequence of the use of the means to the good end which is directly intended.

The good which is directly intended, (a) by using the means (c), and the foreseen but unintended negative consequence of the use of that means (d), are the double effect of the use of means (c) to achieve (a).

21. Let us take a more specific sartorial example a little in order to bring out a further aspect of double effect. Angela has been invited out and wishes to wear clothes which are comfortable and which will impress. Unfortunately, she does not have appropriate clothes. Her friend Beatrice, who is exactly the same size, has a beautiful, delicate, elegant and hellishly expensive outfit which she deems appropriate and asks to borrow for the occasion. Betty lends it to her, asking her to take good care of it. Let us now imagine two possible scenarios. On one scenario, Angela brings the outfit back without any obvious damage, having partied sedately. We must presume that there is some wear and tear, but it is minimal and Betty has no reason to give it any serious thought. The second scenario is a cautionary tale. Angela brings the outfit back in shreds, the party having included a climb up Table Mountain range from the Atlantic seaboard, a hike across the top of the mountain, and an abrasive slither down Skeleton Gorge on the other side of the mountain. When Betty presses her about it, Angela is unapologetic. She says that wearing out is what clothes do. In wearing the clothes while mountaineering, she intended to protect herself from the elements. Of-course she knew that the clothes would be shredded in the process, but this was a foreseen but completely unintended consequence of wearing the clothes. Betty is unconvinced, consults her lawyer, and Angela is sued successfully for causing malicious damage to Betty’s outfit.

22. On the first of the two scenarios, it seems intuitively plausible that the effectively undetectable wear unavoidably suffered by the outfit while being worn by Angela was unintended by her. Were Betty to be asked why she does not hold this almost indiscernible wear and tear against Angela although she surely realises, at some level, that the outfit could not be worn without suffering some minor wear and tear, she would be likely to answer that some wear and tear is reasonable. The amount of wear and tear suffered by the outfit on scenario one is proportionate to the purpose for which Angela stated that she wished to borrow it. In the case of the second scenario, by contrast, the extent of the wear and tear is “way over the top”. It is totally out of proportion to the reason Angela gave for asking to borrow the outfit. Indeed, it is so disproportionate to her manifest purpose that Betty, knowing that she is possessed of reason and not insane, is bound to judge that the damage to the outfit is malicious. This implies that it cannot be said not to have been intended.

23. What emerges from the two sartorial scenarios is that, in order to be not just a foreseen negative consequence of the means used to bring about something good, but also to be characterised as an unintended consequence, the good which is sought must be sufficiently weighty, as it were, to justify the resort to a means which has that foreseeable negative result. There needs to be a due proportion between the good that is sought and the evil which results from the means which have to be used. The negative consequence must, to put it crudely, not be “over the top” in relation to the good which is sought.

24. With this principle of proportionality, we have covered all the elements of the principle of double effect. Pennies will probably have begun to drop by now: the principle of double effect is a set of criteria which are used where resort to the means needed to bring about a beneficial effect also has a foreseeable negative consequence or set of consequences. The nub of the matter, in such circumstances, is the question as to whether the beneficial effect or effects are, or are not, appropriately proportionate to the negative consequences. Bearing this in mind, let us seek to apply this to the imposition of genital surgery on intersexed infants and children.

Double Effect and Non-Consensual Genital Surgery

25. The principle of double effect does license the imposition of non-consensual surgery, genital or non-genital, where it is truly needed in order to preserve of the life or the physical health of the person subjected to the surgery. The good which is sought, on this scenario, is the preservation of the life or physical health of the person whose life or physical health is threatened. The surgery is the necessary means whereby it is intended to achieve the good which is sought. Physical trauma – an unavoidable concomitant of surgery – and perhaps unavoidable psychological trauma, are the foreseen consequences of the surgery. Given the scale of the evil which would result from refusal to operate, loss of life or the destruction of physical health, the foreseen negative consequences are not disproportionate to the considerable good brought about by the surgery, and are clearly not at all part of the direct intention of the surgery.

26. In view of the trauma unavoidably associated with the surgery, the principle of double effect would not license the imposition of such non-consensual surgery where an equally accessible, equally effective and less traumatising alternative course of treatment was available. On such a scenario, the trauma associated with surgery would be rendered disproportionate to the good achieved through surgery by reason of the fact that the self-same good could be achieved without the negative consequences. The principle of double effect would also fail to provide a warrant for the imposition of non-consensual surgery if the performance of such surgery was in fact unlikely to bring about the preservation of life or physical health which was sought by means of it.

27. Our first step, in applying the principle of double effect to the imposition of genital surgery on intersexed infants and children, must be to describe the benefit to the infant or child which is sought by means of the surgery. Professor John Money’s theory, which undergirds the imposition of non-consensual surgery on intersexed infants, provides the description which we seek. As you will recall, Money’s theory is that there is a window-period, the first two years of a child’s life, during which the child’s gender identity is still plastic. Any gender of rearing finally settled upon in this period will “take” and determine the life-long gender identity of the person provided that the infant or toddler is equipped with gender-standard genitalia and that the infant or toddler is reared in the chosen gender-role with real conviction. The surgery seeks to equip the infant or toddler with genitalia consistent with the chosen gender of rearing, and it does so in order to ensure that the gender-role chosen for the infant or toddler “takes” unproblematically and without psychological trauma. The theory is that the person will be enabled to grow up untraumatised, in the psychological sense at least, by the fact of having been born intersexed. Indeed, given the secrecy and economies with truth in relation to patients and their parents, which are also part of the standard protocol of treatment, the person may well not be aware that he or she is intersexed. The theory is that he or she will have been enabled simply to get on with the business of living untroubled by a sense of being significantly different, physically or psychologically, from most people reared and living in the same gender-role who are not intersexed.

28. The above description of the benefit of the imposition of non-consensual surgery within the first two years of life stands and falls with John Money’s theory. Given that the claimed benefit of the surgery is constrained to a specific window-period, the same benefit cannot be claimed, at least not on a similar basis, with respect to non-consensual first-time genital surgery imposed upon toddlers or children significantly older that two years of age. Lacking the support of John Money’s theory and the empirical support which was claimed for it prior to 1997, it is considerably more difficult to construct a defence for this relatively late imposition of surgery. In the interrogation of the imposition of surgery, I will therefore restrict argument to the performance of surgery licensed by John Money’s theory. Should such surgery, which is undergirded by a sophisticated and influential theory of the development of sexual identity, not stand up to interrogation, the imposition of non-consensual surgery on older children surely stands little chance of proving to be defensible unless it can be shown to be needed to preserve life and physical health.

29. A difficulty, which would seem to be insuperable, is that little bodies grow extraordinarily quickly and that scarred tissue is stretched and is damaged in consequence of this natural growth. The early imposition of genital surgery almost invariably results in damage later in life. A child subjected to early genital surgery is set up, in effect, for periodic genital surgery throughout childhood, teens and sometimes even well into adulthood. The effect of this must surely be to void the alleged benefit of enabling the child to grow up blissfully unaware that his or her genitalia are non-standard. On the contrary, notwithstanding whatever is said to the child or teenager, what the periodic imposition of surgery unavoidably communicates that something about the child’s or teenager’s genitalia is awry. Those subjected to such surgery are typically exhorted not to let others know that the surgery performed was on the genitalia, and this reinforces a sense that there is something shameful about all of this. Mapping the principle of double-effect onto this, given that the claimed benefit turns out to be unobtainable in such cases and given the trauma involved over many years, the harm caused by the surgery must be deemed to be disproportionate to what turns out to be an imaginary benefit.

30. The surgery imposed on intersexed infants tends to be feminising surgery. This is because, as an American surgeon once said, “it is easier to dig a hole than to build a pole”. What she meant is that it is difficult at the best of times surgically to construct a pseudo-penis which does everything that a penis is expected to do, when the patient is an adult. The surgically-constructed has to have a urethra passing all the way through it which allows for urination from the centre of the glans; and it needs to be able to become erect at appropriate times. Surgically-constructed penises are vulnerable to fissures and infections. The difficulty which attends phalloplasty in a fully-grown adult poses insuperable difficulties when bodies are still growing, and especially in the case of infants and children. The surgeon wished to suggest that it is easier to perform vaginoplasty, the vagina being conceived as a hole of sorts, a receptacle for a penis in sexual intercourse. The trouble is that the vagina is not simply a hole, and describing it as such is unbelievably crude. It is a highly complex organ in and of itself. Intersexed activists who are now in their adulthood after the imposition of such surgery in childhood report that, rather than facilitating unproblematic sexual activity, the physical results of the surgeries is often negative in this sense. They also report considerable psychological trauma as a direct consequence of the repeated bouts of surgery, the secrecy about it and the sense of shame about their bodies which all of this created.

31. A pseudo-vagina is a wound, and it is in the nature of wounds to close up and to heal. In the case of the surgically-created vagina, it needs to be kept open, and this is achieved by the periodic insertion of a form or a dilator into the hole which surgery has created. When the wounding is fresh, this is extremely painful. An adult who has sought such surgery actively is likely to have been braced for this aspect of the procedure. A toddler does not understand and is not in a position to make an informed choice. A parent will probably have to insert a form or a dilator regularly. Obviously, the parent does this in the belief that it is in the interests of the infant; but the infant does not yet have a rich enough stock of concepts to be able to know this. What the infant experiences is repeated penetration and pain occasioned by it. How can this not result in psychological trauma? Given that the infant is being set up for the trauma of repeated surgery for years to come, and that the reports of a significant body of adults subjected to surgery at birth suggest that the outcome is often great physical trauma, sexual difficulties and terrible psychological trauma which blights lives, it is clear that the harm caused is disproportionate to any benefit, and that the harm cannot therefore be said to be an unintended consequence of the treatment. Were the treatment necessary for the preservation of physical health or life, by contrast, it would be a completely different matter.

32. There is quite simply very little evidence, and perhaps none that is compelling, that the imposition of genital surgery on intersexed infants when this is not required to preserve physical health and life yields the benefits that the theory of Professor John Money, which undergirds the practice, claims to follow from such surgery. There is a wealth of testimony, by contrast, from intersexed people upon whom surgery was imposed in infancy, childhood and youth, who make it clear that their bodies have been damaged and their lives have been blighted by this practice. While the intention which underlies the practice is doubtless to benefit those upon whom such surgery is imposed, the absence of evidence for the claimed benefits of the surgery ensures that the harm caused must be deemed to be disproportionate, when the principle of double effect is applied, and this harm cannot be shrugged off as the mere foreseen but unintended consequence of the imposition of such surgery. Given that the Principle of Double Effect does not license the practice, the imposition of genital surgery on intersexed infants must be deemed to be unethical whenever it is not shown to be necessary for the preservation of physical health or life, and whenever it exceeds what is required to preserve physical health or life. It is rare for genital surgery on intersexed infants to be required to preserve physical health and life. It follows that, in most cases, the imposition of such surgery is ethically unjustifiable.

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[1] See M. Diamond, and H.K. Sigmundson, "Sex Reassignment at Birth: Long Term Review and Clinical Implications," Archives of Pediatrics and Adolescent Medicine 151 (1997): 298-304.

[2] M. Diamond, and H.K. Sigmundson, "Management of Intersexuality: Guidelines for dealing with Individuals with Ambiguous Genitalia," Archives of Pediatrics and Adolescent Medicine 151 (1997): 1046-1050.