GIRES Final Report to The Nuffield Foundation
Funding provided by the Nuffield Foundation and other charitable donors has enabled GIRES to undertake a highly important project. Its purpose is to improve the treatment offered, in the UK and other countries, to adolescents who experience profound and persistent discomfort with the gender role assigned at birth because it clashes with their innate gender identities. Such severe discomfort is rare, affecting about 1 in 4,000 in the adult population.
Those that make a permanent transition to a gender role that conforms to their gender identities, who may be termed transsexual people, usually have memories of such discomfort that date back to their early childhood. Gender discomfort may be detected in children aged as young as three or four but its outcome cannot be confidently predicted until puberty. Transsexual people often regret that they were not treated at the onset of puberty, when they experienced intense stress as their bodies began to develop in conflict with their gender identities.
During puberty, young transsexual men develop breasts, start to menstruate and sometimes become frustrated by their small stature. Young transsexual women’s voices deepen, they grow beards and prominent adam’s apples, experience erections and become taller than most other women. Modern medical treatment can safely prevent those unwanted changes.
In the UK, some families who have children and adolescents who experience gender discomfort are referred to the specialised gender identity development service at the Portman Clinic in London. Ten years ago, it was receiving about 15 cases per annum. That number has grown to 60 in more recent years. The reasons for that increase are not known. It is possible that there is a real increase in atypical gender identity development among children generally. Some fear that might be due to environmental pollution, which does appear to affect the development of secondary sex characteristics in other species.
In the human population pollution is associated with a significant alteration in the ratio of male to female births. However, the increase in cases may be due to these children and their families now feeling more able to be open about the condition. Certainly, there is greater awareness of the condition and less stigma attached to it, as a result of its being discussed in television programmes. Also, the enactment of legislation that protects transsexual people provides real evidence of society’s greater tolerance towards them.
The principal clinicians responsible for the medical care of British adolescents argue that to interrupt or interfere with the normal pubertal process may result in unsatisfactory physical development and significant psychopathology. They do not describe those adverse psychological consequences or compare them with those that arise from the development of unwanted secondary sex characteristics.
In transsexual people those pubertal changes: (a) cause intense stress and even suicidal feelings, (b) have to be reversed later by invasive and costly surgical and other procedures and (c) result in adverse long-term quality of life effects. Even so, the British clinicians insist that no such intervention should be initiated until all the pubertal body changes are complete and the adolescent has experienced their full effect. They assert that the adolescents have to accept changes that they consider “foreign” and undesirable.
The treatment protocols applied at the Portman Clinic are at variance with those followed in The Netherlands, Belgium and the USA. The Dutch, Belgian and American clinicians have developed extensive expertise in the psychological assessment of gender variant adolescents. They therefore feel confident enough to offer suspension of puberty shortly after it has commenced, in carefully selected cases, by means of medication that blocks the upsurge in masculinising or feminising hormones that would otherwise occur.
This medication is only provided with the fully informed consent of the adolescent and the parents or guardians. By this early stage of puberty, the adolescent has been able to experience the initial effects of naturally produced hormones, which is diagnostically important, but has not yet developed unwanted body characteristics. Thus the adolescent is spared the stress of full puberty and given time to examine thoroughly his or her own sense of gender identity. The clinician can use the period of suspended puberty for further careful diagnosis.
If such adolescents are then confirmed as transsexual, hormones, can be offered to masculinise or feminise the body so that it aligns as closely as possible to the confirmed gender identity. During this process, the adolescent’s bone density, ratio of leg length to body length and overall height, which all evolve critically during puberty, are carefully monitored and successfully controlled. Surgery is offered in adulthood to complete the alignment of the body.
To resolve these differences in approach, GIRES worked with the leading child and adolescent psychiatrist at the Portman Clinic to recruit a multidisciplinary and multinational Joint Project Team, including family members, to examine the alternatives and establish an agreed protocol for application worldwide. GIRES then arranged for the Team to meet for a two-day Symposium in London in May 2005. The Team’s agreed progress report is included herewith and shown on the GIRES website.
Clinicians caring for adolescents who experience atypical gender identity development and are entering puberty can refer to three documents for information on what medical approach would be in the patient’s best interest. The first four of these documents are in agreement. The last postulates a contradictory view.
- The Guidance published in 1998 by the Royal College of Psychiatrists (RCPsychs) was prepared based on consultation among a multi-disciplinary group of 12 eminent clinicians all of whom had extensive experience of working in this field, including 3 who are members of the Joint Project Team. It states that there can be clinical reasons, in the adolescent’s interest, to intervene before they reach a post-pubertal state
- The Standards of Care published in 2001 by the World Professional Association of Transgender Health (WPATH) were prepared by a multi-disciplinary group of 17 eminent clinicians. All of these clinicians had extensive experience of working in this field, including 2 who had participated in preparing the RCPsychs Guidance and 3 who are members of the Joint Project Team. The WPATH Standards state that adolescents who have experienced puberty in their biologic sex at least to Tanner Stage Two may be offered blocking medication. (Note that there are five Stages in the measurement of pubertal development in the Tanner Scale). The WPATH Standards are internationally recognised as authoritative. Furthermore, following the 2005 Symposium in London, the standard in respect of blockers has been publicly endorsed by two members of the Joint Project Team who did not participate in the preparation of either the RCPsychs or WPATH documents:
- Peter A. Lee, of the Department of Pediatrics, Penn State College of Medicine, in the article he wrote jointly with Christopher P Hook, M.D. that has been published in the Journal of Pediatric Endocrinology & Metabolism, Volume 19, No. 2, 2006. Journal of Pediatric Endocrinology
- Norman P Spack, M.D., of the Children’s Hospital, Boston and Harvard Medical School, in his article published in the Lahey Clinic Medical Ethics Journal, Fall Edition 2005
The Guidelines published in 2005 by the British Society of Paediatric Endocrinology and Diabetes (BSPED) were prepared by three clinicians, only two of whom appear to have experience of working in this field. Both are members of the Joint Project Team. One is a paediatrician. The other is a paediatric endocrinologist, who was also a signatory to the above Guidance published by RCPsychs.. The BSPED Guidelines describe the existing practice of these two specialists. They state that, regarding the administration of puberty delaying medication, no such intervention should be initiated until all the pubertal body changes are complete (following Tanner Stage Four/Five).
They do not refer to the contradictory practices described in the RCPsychs and HBIGDA documents and already used successfully in The Netherlands and the USA. Although eligibility for treatment should primarily be based on psychological assessment, there appears to have been no involvement of any psychiatrist or psychologist in preparing the BSPED Guidelines. The hypothesis advanced by the authors of these Guidelines is essentially that, between Tanner Stage Two and Tanner Stage Four, gender identity may develop inconsistently from that which can, according to the Dutch screening protocol, be confidently assessed at the start of this period. There appear to be no data from controlled studies of human subjects that support the BSPED hypothesis. None of the adolescents provided with blockers by the Dutch clinicians has expressed regret.
In the UK, even within a group of 23 adolescents who had not been screened at Tanner Stage Two, 20 (87 %) transitioned to live permanently in a gender role different from that assigned at birth. The medical ethicist who is a member of the Joint Project Team has submitted a paper to the International Journal of Children’s Rights. The paper contends that (a) the BSPED approach risks being incongruent with English legislation and with the ethical principles that such legislation incorporates and (b) it is mistaken to assume that clinicians are in no way responsible for the foreseeable consequences of their inaction (which include self-harm and suicidality in adolescents who are denied medication to suspend puberty).
The British paediatrician who is one of the authors of the BSPED Guideline, accepts that they are not binding, in the UK or elsewhere in the direct legal sense. Nonetheless, he asserts that “they do guide good practice in Britain and will in practice almost always be respected. Those who do not respect such Guidelines may find themselves at clinical governance risk.”
Other clinicians may decide that the HBIGDA Standards and Dutch protocol are better suited to the interests of their adolescent patients. This paediatrician would advise them that “they would need to understand that the Dutch protocol is a research protocol, not a protocol for clinical treatment. It is only used to treat young people within a research setting with full evaluation and detailed follow-up within an experienced and multidisciplinary team. Young people in Holland will not be treated outside this research setting. This clearly is not possible for clinicians working alone (e.g. outside an experienced team) and working outside research settings. It would be considered unacceptable practice for such isolated clinicians to use a research protocol outside a research setting – at the very least in Britain, and in most countries probably.”
Again, it should be noted that the BSPED Guidelines were not prepared by a multidisciplinary team. In any case, it is clear from this paediatrician’s assertions that there would be no grounds for professional colleagues to object or view with disfavour any clinician working within an experienced multidisciplinary team who decided to offer suspension of puberty at Tanner Stage Two to carefully screened adolescents, provided that this was in a research setting with full evaluation and follow up.
The difficulties that the BSPED Guidelines create for adolescents experiencing profound and persistent gender discomfort are illustrated by the following extracts in the case study available on this site. It was written by a 16 year old to the female paediatric endocrinologist who is a co-author of the Guidelines and had been following them in caring for this patient.
- The last two and a half years have been horrendous for me…
- Would your brain be screaming out…
- Living in a male body hurts beyond belief…
Many transsexual people have experienced similar agonies. That suffering is unnecessary.
The Joint Project Team’s consensus view is that a research project should be initiated, ideally involving two or more centres sharing a common assessment protocol (to be developed), that explores the benefits and drawbacks of these two approaches, before evidence based guidelines can be written. The research project would require ethical approval, which should facilitate the willingness of the clinical organisations involved to endorse the local research. The clinics in London, Amsterdam and Boston have embarked on such a collaborative research project.
Even when data gathering gets under way, there is likely to be a five-year wait for the results. There may be an ethical issue in meanwhile refusing to give protection from adverse pubertal development to the British adolescents in the research programme while offering it to those in The Netherlands and the USA. However, the results of any Court action to resolve that issue, even if successful, would be too late to help an adolescent whose puberty has already begun.
Adolescents from the UK and other countries cannot be treated in Holland. Treatment in the USA remains a possibility, but that is an expensive option.
In the light of (a) the information already provided by members of the Joint Project Team, (b) the continuing debate that is taking place between its members and (c) the expected delay in publishing the results of the proposed three-centre research, it will be helpful to other clinicians, gender dysphoric adolescents and family members to know what GIRES perceives to be the Team’s majority view of best practice. This entails providing medical care in four phases, as listed below.
- Careful initial psychological observation, assessment and support. This includes work with the family and the school to ensure that a supportive environment is provided for children exhibiting cross-gendered behaviour or dress. The difficulty for the clinicians conducting the first stage of treatment, psychological assessment, is in identifying accurately the adolescents for whom the subsequent stages are appropriate. No physical test is available. There is persuasive evidence that the brains of transsexual people are programmed before birth to become sexually differentiated, in small but highly significant ways, incongruently with the rest of the body. GIRES has brought together another team to prepare a paper on this subject. However, this brain difference is, and is likely to remain, undetectable in living subjects. Hence, clinicians must rely on the child’s own account of his or her feelings, information from the parents and psychological tests.
- Suspension of Puberty at Tanner Stage Two of Development. The adolescent is diagnosed and thoroughly screened at the onset of puberty. The adolescent’s response to the physical changes experienced in early puberty is a significant indicator of how likely it is that profound gender dysphoria will persist (“Transgenderism and Intersexuality in Childood and Adolescence – Making Choices” – Peggy T Cohen-Kettenis and Friedemann Pfafflin – 2003, page 145). Pubertal development beyond Tanner Stage Two may be suspended by means of medication that blocks the production of the natural hormones that would otherwise feminise or masculinise the body and preserves the status quo. This gives the adolescent and the clinician more time in which to assess what is in the adolescent’s best interests before the onset of physical changes that would be highly distressing and difficult or even impossible to reverse, for instance the development of breasts and menstruation in people with a male gender identity, and a deep voice and facial and body hair in people with a female gender identity. For adolescents who are first seen by the clinician at a later stage of puberty, the screening process would be equally thorough before puberty suspending medication were offered. In all cases, suspension of puberty is subject to the properly informed consent of the adolescent and also, because family support is necessary to achieving a successful outcome, that of the parents or guardians. In cases of adolescents with male gonads and genitalia, it should be made clear that suspension of pubertal development (a) limits the amount of tissue available for the later creation of a vagina and, consequently, surgical procedures may be required that would not otherwise be necessary and (b) precludes the collection of semen for storage should fertility be desired later on. In all cases, reassurance can be given that, if the diagnosis or the adolescent’s intention were to change during this phase, cessation of the medication would result in the resumption of the previous pubertal development, including attainment of normal fertility, without harm to the adolescent.
- Hormonal Medication to Masculinise or Feminise the Body in Accordance with the Confirmed Gender Identity: This treatment is monitored and controlled to ensure that bone mass and ratio of leg to body length achieve normal levels. It permits the manipulation of overall height so that it conforms to the normal range for adult males or females. Some of the physical changes induced by this treatment are difficult or even impossible to reverse, including the effects on voice pitch and the growth of facial and body hair following the administration of masculinising hormones and, following feminising hormones, the development of breasts. However, with medical help, normal levels of fertility can be achieved in either case, but only on cessation of the medication in those receiving feminising hormones. Administration of cross-sex hormones to adolescents is subject to their properly informed consent. In the UK, if the adolescent were properly deemed to be competent to give that consent, it might be legally possible to offer cross-sex hormones without the consent of the parent or guardian. If such a course were considered, the adolescent would need to review realistically the probability of being able to lead a successful life without family support. In other countries, there may be a minimum age at which cross-sex hormones may legally be offered with or without the consent of the parent or guardian. In all cases, continued counselling and support should be offered to the adolescents, the parents or guardians and the schools.
- Surgery: Surgery is offered to alter the body to conform as nearly as possible to the core gender identity. Many of the procedures, such as removal of the testes or ovaries, are impossible to reverse. Currently, these procedures would irreversibly rule out fertility, although advances in medical technology may, in the long-term, enable the conception of genetically related children. Normally, this phase of treatment will only be offered to those who have attained adulthood and are in an adult gender identity service where treatment is provided in conformity with the HBIGDA Standards of Care.
Pending the outcome of the three-centre research, GIRES will continue to compare the above approach with that offered by the British clinicians. It will promulgate this comparison via its website, at conferences and in publications, at no further charge to the Joint Project. Its paper “Early Medical Treatment for Transsexual People” has been published in the journals of two support groups: The Gender Trust and Gendys (see link above). Other Team members are communicating their own views by similar means.
In summary, we can report that the project has achieved valuable results. It has opened an international debate about best practice in this complex field of medicine. The information it has generated can now be readily accessed and is being continually augmented by new academic papers. We hear that clinicians greatly value the material now available on the GIRES website.
All this has been achieved within the budget of £9,800. Nonetheless, it is somewhat disappointing that a consensus has not already been achieved on best practice and that there will be a long wait for the results of the comparative research now under way. Among British families in particular, those who can in any way afford to do so have to consider taking their children to the USA for psychological assessment and puberty suspending medication.