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UKIA's Recommendations for the assessment and treatment of intersex conditions.
(Note: We should point out that these recommendations are the views of
UKIA and should not be interpreted as representing the views of any other group.
This is an early draft and therefore we welcome comments, discussion
and contributions from other Intersex groups and individuals - all comments to
ukia@mairimac.demon.co.uk)
Background:It is vital, in all cases of infants who present with variant genitalia, to establish most probable cause via a complete history of immediate and extended family and physical examination.The practicalities at the root of this approach can best be served by the co-ordinated response of a team of specialist staff working, in the first instance, with the parents and ultimately, with the child. All births must be accompanied by more than a cursory glance at the child's genitals. A thorough examination is necessary to avoid the risk of intersex conditions going undetected. The classic response to an infant with variant genitalia is to treat all cases as a medical emergency. This may indeed be true when the patient is diagnosed, for example, with an electrolyte imbalance, however, in most cases, in the absence of any life-threatening condition, there is less need to rush the investigation. On the contrary, it is vital to proceed at a pace commensurate with the complexity of the situation and the need to cover all contingencies. Alongside this consideration, it is important to recognise the need to establish a clear diagnosis and assist parents to adjust to the reality and implications of their child's condition. Once it has been established that there is a clear need for further investigation, this should encompass internal as well as external genital structures plus genetic and endocrine evaluations. Pelvic ultrasonography genitography may also be needed. Such a comprehensive assessment will involve the combined services of a paediatric endocrinologist, radiologist and urologist working as a team [1]. Empirical studies of this area of paediatrics have demonstrated clearly that: "A decision regarding sex of rearing in this situation is multifactorial and must be decided on a case by case basis by the team and parents" [2]. Sex and Gender:Relative to the need to arrive at a speedy, but holistically accurate diagnosis, "It is important to clearly understand that the objective of these investigations is not to reveal the "true gender" of the child; such a revelation is of little practical value. Instead, it is to identify the precise underlying cause (e.g., 21 hydroxylase deficiency, testicular dysgenesis, or partial androgen insensitivity) [3].There is a great deal of debate in society and within the practice of medicine itself as to the relationship between sex and gender. At the root of this is often a fair degree of confusion as the relationship and interaction between physical presentation and sense of self. Studies with individuals whose physical variance leads to mis-identification of their true gender-identity, either due to some variation in their genital appearance, or a fundamental conflict between a sense of self and the outer, physical presentation, has shown the folly of oversimplification of the complexities of identity. The easiest model for human beings to understand is not reflected in the reality of living organisms. Whilst the bi-polar model of "male" and female" is comfortingly simple, it is a flawed concept. Despite this however, it has often formed the basis on which decisions regarding a child's genital sex and ultimate gender-role will be based. The need to consolidate the status quo by unnecessarily early intervention has resulted in large numbers of people who grow from childhood into adults who posses only a fragmented sense of self and a feeling of loss, heightened by ingrained resentment at a disenfranchisement which need never have occurred. As stated above, the assessment of a child with intersex features must be the work of a combined team of experienced practitioners working closely with the child's parents. However, just as a decision regarding clinical treatment cannot, without risking an inadequate diagnosis, be accomplished by one or two individuals, the debate regarding gender-identity, gender-role and rearing cannot, in most cases, be balanced without input from the patient. UKIA holds, both from an experiential standpoint and from a clinically-informed view, that not all bases have to be covered in one rush to fit the infant patient into a space that may never truly fit. A staged approach to diagnosis, emergency treatment and longer-term care and support, of both patient and family, whilst not an absolute guarantee of being the correct decision in all cases, is the way to proceed. This respects the right of all individuals to have every opportunity to take part in all discussion in order to make a fully informed final decision affecting themselves. "Gender identity is the private experience of gender role and gender role is the public expression of gender identity" [4]. If gender role is imposed externally by pressure from others, such as parents or those with vested interests, the conflict for the individual may be highly destructive, If this situation is further exacerbated by the opinions of others regarding "best option", being visibly manifested by physical intervention in another's personal, physical integrity, the results can be catastrophic. "Errors in foetal hormones produce errors in genital dimorphism which can be misread by the doctor at birth. A girl may be read as a boy and a boy may be read as a girl. The odds of this happening are roughly 1: 2000 births -- fairly common. This innocent guessing affects how society will influence the child from that point on. The infant's perceived or assigned sex from birth will constitute the person in the eyes of society. For example, pink or blue clothing, choice of name, pronouns used, legal status, social conventions and a myriad of other distinctions relentlessly remind and reinforce in the child's mind that he is a boy or she is a girl. These pervasive and barely conscious cultural forces mutually reinforce the biologic forces in normal children" [5]. Many can, and will, point to the successes of those for whom some surgical intervention has achieved the very thing they themselves would have chosen in later life. In any situation where more than one option is available to us, there will be examples of correct "guesses". Statistically, there have to be successful outcomes to any intervention. To use these successes as a light to show us the route which all should take is presumptuous and dangerously simplistic. We do well to remember that, without the fullest possible involvement of the patient, even with the successes we have removed that which we, as sentient, intelligent beings are justifiably proud -- our ability to exercise choice and to extend that choice to others. The guidelines proposed by the United Kingdom Intersex Society are based on the principles set down as one of the keystones of medicine, "first, do no harm", and the principles of human rights which underline the importance of respecting the dignity and rights of all people. Recommendations:
References:
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