Article to the BMJ Flags Clinical Concerns about Current Orthodox Practices in Intersex Medicine
An article published to the current edition of the British Medical Journal – BMJ – clearly flags up rising concerns about the changing atmosphere surrounding clinical interventions toward anyone born intersex. It cites the European Union Agency for Fundamental Rights statement about intersex human rights, along with the recently adopted legislation in Malta that provides legal protection from pre-emptive medical intervention for anyone born intersex.
The UN Special Rapporteur report of 2013, the EU Human Rights Statement and the Maltese laws are all a consequence of determined, and dedicated work by intersex activists working with legislators. The recent joint statement by 12 UN agencies after meeting with a number of intersex activists in Geneva is further evidence of the strides being made by intersex advocates.
It is rare that well known clinicians are so explicit about the known vagaries of current intersex protocols, but the BMJ articles makes clear what intersex activists have been saying for many years.
Paediatricians’ confidence in the ability to construct genital anatomies to meet cultural expectations of appearance and function has not been borne out. The intended outcomes of these interventions can be known only when individuals reach puberty and adulthood, and reliable longitudinal research does not exist.
The first step in changing present-day attitudes and protocols enacted on people born intersex is to acknowledge there is a problem.
In the UK, genital surgery for children with atypical genitalia remains part of standard medical care. Given the contentious scientific issues and in light of recent international recommendations, audit of all such surgery should become mandatory. Furthermore, a credible non-surgical care pathway for affected families should be a performance indicator against which standards of care are judged. Given the increasingly adversarial atmosphere in this field, more of the same is not an option.
This article admits there is a problem, and the changing attitudes of legislators toward what has been regarded as orthodox, clinical practice toward anyone born intersex is proving a challenge that clinicians are struggling to know how to deal with. To make a public call for an audit of intersex surgery, in 2015, is an admission that medical authority has little or no idea the scale of the issue at hand.
It isn’t only surgery that needs to be reigned in. There is the issue of hormone interventions used to influence development and puberty along so-called approved paths that are influenced by extremely narrow interpretations of the binary gender narrative. Clinicians must also stop the deeply unethical, unlicensed use of pre-natal dexamethasone to deliberately alter the development and behaviour of girl children. Many more are caught in the net, and there is no long-term knowledge base to tell anyone what the lifetime consequences of this intervention may be. Clinicians have no idea how many people in the UK have been exposed to pre-natal dex, there being no register or follow up of non-CAH affected individuals exposed to this drug. Pre-natal dexamethasone makes no difference to the underlying, genetically inherited endocrine dysfunction that is CAH.
OII-UK has always held that the pre-emptive use of medical procedures to alter intersex infants and young children is anathema. As this article to the BMJ makes clear, clinicians are known to manipulate information to secure the answers they desire – consent to surgery and other interventions.
There is no identifiable psychoeducational care pathway to help parents deal with situations that may feel daunting, such as talking to nursery staff and babysitters or discussing with siblings and eventually the affected child about diversity in sex and gender.
There is also an acknowledgement, rare in a public document, of the continued mis-assignment of intersex infants as female because the procedures are easier, and clinical practice has continued to do it that way in the face of personal evidence from affected adults that doctors are more interested in adhering to protocols than accepting the protocols are deeply flawed.
Patient narratives point to the potential harm of multiple operations and repeated genital examinations. The rate of female assigned and surgically feminised children who reassign as male is of concern.
OII-UK urges government agencies and medical authority to engage with intersex representatives to discuss the very real human rights abuses that current intersex medical protocols inflict on individuals born intersex, and how best to navigate a path to find a way to include the rights of personal autonomy and bodily integrity that people born intersex have been so long denied, but are entitled to in their life.