Evaluating the Term ‘Disorders of Sex Development’: A Multidisciplinary Debate

Abstract

In 2014, almost 10 years after the 2005 International Consensus Conference on Intersex in Chicago, one of the conference co-organisers, under the auspices of a number of international paediatric endocrinology societies, launched the Global DSD Update to assess progress. A consortium of fourteen work groups conducted online/email discussions to explore each of the fourteen key topics, one of which was use of the controversial medical umbrella term ‘Disorders of Sex Development (DSD)’. The initial key question for Work Group 1 (referred to hereafter as WG1) was a “reconsideration of the nomenclature and the conditions to be included”. Nineteen individuals from a variety of professional backgrounds, including medical practitioners, patient advocates, academics and psychologists, accepted invitations to contribute. This article is based on a transcript of the 6-month debate, collated using thematic analysis methods. Seven key themes were identified: a) Disorder of Sex Development – What does this mean? b) How useful is the word ‘Disorder’? c) How useful is the word ‘Sex’? d) Benevolent non-disclosure of terminology e) How useful is an umbrella term? f) The issue of evidence, and g) Considerations for future nomenclature. This article also highlights the challenges in debating issues that straddle the medico-social interface, such as terminology, and between participants coming from different professional disciplines and epistemological standpoints. While recognising that such discussions can be useful and enlightening for all parties, this article recommends that a shared frame of reference be agreed by all stakeholders from the outset in order to provide a framework for discussion.