Following a discussion with some friends about the team at UCLH, the issue of ‘changes in practice’ came up. I, like several others, through conversations with members of that team, was under the impression that these changes suggested that surgical interventions in the lives of intersex children before they could themselves consent were being reduced.
Between 2003 & 2008, I witnessed a series of meetings involving academics, medical professionals, condition support groups, and intersex people, the view that appeared to be expressed by professionals engaged in those meetings, and in private, was that practice was changing in the UK, surgeries were less frequent, and I got the impression that there was a shift was towards deferring decisions about surgery to a time when children could consent for themselves. This was the outcome of the work and findings of people like Sarah Creighton & rest of the team at University College Hospital London. This view was repeated only recently to somebody in OII-UK by a member of that team.
However, I had an argument with a long-standing friend about this recently, who said that he did not believe things had changed in the way I thought, and challenged me to produce evidence where any of the team have stated this in writing. So, I did some digging around, and I regret to say that I cannot find any such statements. What I have found, however, in searching for any papers that might be relevant to this question, is this statement, within a paper co-authored by the team at UCLH:
Ultimately, it is the surgeon’s responsibility to undertake surgery for genital ambiguity if considered necessary, to restore function and achieve an acceptable cosmetic outcome. There are instances where surgery may not be required or desired by the parents or where surgery is best delayed until adolescence or adulthood. The latter approach is becoming increasingly popular and the effect of this paradigm shift will only become apparent in the future. Careful long-term follow-up is therefore of paramount importance.
Children raised male are likely to require at least two surgical procedures to reconstruct the penis in the first 2–3 years of life. In the majority of cases, the cosmetic and functional outcome is very good. In others where the penis is particularly small, a good outcome in terms of size may not be achievable. Some children raised male may require orchidopexy, or even gonadectomy where streak gonads are present. Müllerian structures of a significant size may also require removal, whilst smaller Müllerian remnants can be left in situ as usually they do not cause significant problems.
Children raised female may or may not require surgery in early childhood. Minor degrees of clitoral enlargement do not require surgical reduction and even when clitoral enlargement is significant, reduction surgery should only be carried out after the parents have been counselled about the advantages and risks of such a surgery. These discussions would require the involvement of a paediatric/adolescent gynaecologist from an early stage. In some children, the surgeon may recommend a vaginoplasty in the first 1–2 years of life, and indeed this is currently the standard practice in girls with a long urogenital sinus. This does not, however, obviate the need for further surgery in adolescence or early adulthood and parents should be made aware of this. It is entirely reasonable for those children with a relatively short urogenital sinus to have surgery deferred until adolescence or early adult life, thereby enabling the individual to be involved in the decision-making process.
Finally, the surgeon may be required to surgically remove gonads to protect the individual from gonadal malignancy. The timing of such surgery depends upon the nature of the DSD and the relative reported risk of malignancy. Decisions of an irreversible nature should be evidence based as much as possible and made in conjunction with the MDT.
Caroline E. Brain, Sarah M. Creighton, Imran Mushtaq, Polly A. Carmichael, Angela Barnicoat, John W. Honour, Victor Larcher, John C. Achermann “Holistic management of DSD” Best Practice & Research Clinical Endocrinology & Metabolism, Volume 24, Issue 2, April 2010, Pages 335–354
So, I have to admit some dismay at this, as this completely contradicts my understanding of the situation when I was still in the UK, and I can only conclude that when I was told that things were changing, either I misunderstood what was meant, or was being misled. Because, apart from a bit of lip-service to a paradigm shift, it appears that on the whole, it is business as usual (unless surgery can be avoided), rather than deferral of decision making until the child can consent (unless surgery is absolutely necessary). Very little of substance appears to have changed in the UK from how things were a decade before in terms of genital autonomy, going by this; what change has happened is around engagement with parents in decisions about intervention.
An ethicist’s view
Ethics is often described as a set of rules or principles that distinguish between right and wrong; it is essentially about moral values rather then facts. When there appears to be no single obvious and acceptable ‘right’ way to do something, ethics provides a means of evaluating and choosing between different, often competing options.
Ethical conflicts arise when:
(1) application of clinical facts alone cannot determine what should be done;
(2) there is disagreement about the right course of action;
(3) application of moral principles conflict; and
(4) the law is ambivalent or silent.
“Ethical conflicts require professionals to make value judgements to resolve them. Since individuals within MDTs derive their own moral values from a wide range of sources, for example, family upbringing, education, religious beliefs and professional codes, it may be difficult for them to agree on which set of values they should apply in individual cases. Ethical intervention may provide clarification in a way that is supportive, educational and advisory rather than prescriptive.
Any ethical involvement with the MDT meeting should be first concerned with obtaining appropriate clinical facts that are founded on the best available evidence. These include
(1) the nature of the condition;
(2) its clinical effect on children, young people and parents;
(3) the associated clinical and psychosocial co-morbidities and their likely short- and long-term consequences; and
(4) the ‘reversibility’ of treatment options (e.g., hormone suppression vs. gonadectomy; neonatal vs. adolescent surgery).
Although clinicians have a duty to act in the best interests of their patients, objective standards of best interests for children may be hard to define in isolation. In DSD, there may be tensions between the potentially conflicting obligations of respecting a child or young person’s right to make informed voluntary self-determined choices (autonomy) and providing treatment for the child that carries more benefit than harm. Moreover, any consideration of a child’s best interests needs to include the obligation to respect the family and parent–child relationships.
Traditional guidance for the timing and nature of therapeutic interventions in DSD may pay insufficient respect to the growing autonomy of adolescents and be overly paternalistic in its impact, or may restrict future life choices. The adverse effects of failing to respect the developing autonomy of adolescents are increasingly acknowledged.
What is the emergency? I used to think “socio-medical emergency” referred to the trauma of parents, and helping deal with that. But actually, the only urgency here is in carrying out procedures before the child gets to a point where they can have agency. This is the elephant in the room in this paper: it is a matter of urgency that people intervene BEFORE the child has an opportunity to become recognised as an autonomous agent, and anything that comes later which involves the child in the process comes across as second-best.
What appears to have changed is not the acceptance of the need for greater autonomy of the child, and delaying of procedures until they are of an age where they can be regarded as fit to participate in the decision-making process, but a distribution of the decision making to a group of people which includes the parents, who still end up making the decision on the child’s behalf, before the child gets the chance to speak. While it is accepted that adolescents should have autonomy, that autonomy is still pre-empted by maintaining that early interventions are still appropriate before adolescence is many cases.