Evaluando el término trastornos del desarrollo sexual: un debate multidisciplinario / Evaluating the Term ‘Disorders of Sex Development’: A Multidisciplinary Debate

Natalie Delimata, Margaret Simmonds, Michelle O'Brien, Georgiann Davis, Richard Auchus, Karen Lin-Su.

Resumen


En 2014, casi 10 años después de la Conferencia Internacional de Consenso sobre la Intersexualidad celebrada en Chicago en el 2005, uno de los coorganizadores de la conferencia, bajo los auspicios de varias sociedades internacionales de endocrinología pediátrica, lanzó la Actualización Global TDS para evaluar el progreso en torno al tema. Como parte de esta iniciativa, un consorcio de catorce grupos de trabajo realizó debates en línea y por correo electrónico para explorar cada uno de los catorce temas clave, uno de los cuales fue el uso del controvertido término médico 'Trastornos del desarrollo sexual (TDS)'. La pregunta clave inicial para el Grupo de Trabajo 1 (en adelante GT1) fue una "reconsideración de la nomenclatura y las condiciones que deben ser incluidas". Diecinueve personas de diversos trasfondos profesionales, entre ellos médicos, defensores del paciente, académicos y psicólogos, aceptaron invitaciones para contribuir. Este artículo se basa en una transcripción de un debate de 6 meses, recopilada usando métodos de análisis temático. Se identificaron siete temas clave: a) Trastorno del desarrollo sexual: ¿qué significa esto?, b) ¿Qué tan útil es la palabra 'Trastorno'?, c) ¿Cuán útil es la palabra 'Sexo'?, d) No divulgación benévola de la terminología, e) ¿Qué tan útil es un término general?, f) La cuestión de la evidencia, y g) Consideraciones para la nomenclatura futura. Este artículo también destaca los desafíos en debatir cuestiones que atraviesan la interfaz medico-social, como lo es el tema de la terminología, y los desafíos entre participantes provenientes de diferentes disciplinas profesionales y puntos de vista epistemológicos. Aun reconociendo que tales discusiones pueden ser útiles e ilustrativas para todas las partes, este artículo recomienda que estas siempre partan de un marco de referencia compartido, a fin de estructurar el debate. Palabras clave: Nomenclatura, terminología, TDS, trastorno, intersexual, CARD

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. Key words: Nomenclature, terminology, DSD, disorder, intersex, CARD

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