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

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

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.

Keywords


Nomenclature, terminology, DSD, disorder, intersex, CARD

Full Text:

PDF

References


Hughes, AI, Houk, C, Ahmed, SF, Lee, PA and LWPES1/ESPE2 Consensus Group: Consensus statement on the management of intersex disorders. Archive of Diseases in Childhood 2006. 91:554-63, PMC (PubMed Central).

Klebs, TAE: Handbuch der Pathologischen Anatomie. Berlin, 1876.

Goldschmidt, R: Intersexuality and the endocrine aspects of sex. Endocrinology 1917; 1:433-56.

Morland, I: Is intersexuality real? Textual Practice 2001; 15(3):527-547.

Dreger, AD, Chase, C, Sousa, A, Gruppuso, PA, and Frader, J: Changing the nomenclature/taxonomy for intersex: A scientific and clinical rationale. Journal of Pediatric Endocrinology and Metabolism 2005;18:729-733.

Davidson, R: DSD debates: Social movement organizations’ framing disputes surrounding the term ‘disorders of sex development’. Liminalis – Journal for Sex/Gender Emancipation and Resistance 2009, Available online: http://www.liminalis.de/2009_03/Artikel_Essay/Liminalis-2009-Davidson.pdf.

DSD Terminology (AISSG website). Available online: http://www.aissg.org/43_debates.htm#dsd.

DSDs and the Chicago Consensus Meeting/Statement (AISSG website): http://www.aissg.org/15_ANNOUNCE.HTM#16%20Aug%202006.

Spurgas, AK: (Un)Queering identity: The biosocial production of intersex/DSD; in Holmes, M (ed) Critical Intersex. Ashgate Press, UK, 2009.

Reis, E. Divergence or disorder? The politics of naming intersex. Perspectives in Biology and Medicine 2007; 50(4):535-543.

Holmes, M: The Intersex Enchiridion: Naming and knowledge. Somatechnics 2013;1:388-411.

Topp, SS: Against the quiet revolution: The rhetorical construction of intersex individuals as disordered. Sexualities 2011;16(1/2):180–194.

Davis, G: “DSD is a perfectly fine term”: Reasserting medical authority through a shift in intersex terminology; in PJ McGann, David J. Hutson (eds) Sociology of Diagnosis, issue of Advances in Medical Sociology, Emerald Group Publishing Limited. 2011; vol 12, pp.155-182.

Davis, G: The power in a name: Diagnostic terminology and diverse experiences. Psychology & Sexuality 2014; 5(1)1:15-27.

Hughes, IA: A quiet revolution. Best Practice & Research Clinical Endocrinology & Metabolism 2010; 24:159-162.

Hughes, IA: Consequences of the Chicago DSD Consensus: A Personal Perspective. Horm Metab Res 2015; 47:394–400.

AGREE Collaboration: Development and validation of an international appraisal instrument for assessing the quality of clinical practice guidelines: the AGREE project. Qual Saf Health Care 2003; 12(1):18-23.

Lee P. A., Nordenström A., Houk C. P., Ahmed S. F., Auchus R., Baratz A., Baratz Dalke K., Liao L-M., Lin-Su K., Looijenga 3rd L. H. J., Mazur T., Meyer-Bahlburg H. F.L., Mouriquand P., Quigley C. A., Sandberg D. E., Vilain E., Witchel S. and the Global DSD Update Consortium: Global Disorders of Sex Development Update since 2006: Perceptions, Approach and Care. Horm Res Paediatr 2016; DOI: 10.1159/000442975.

Bryman, A: Social Research Methods (2nd Ed.) Oxford, New York: Oxford University Press, 2004.

Braun, V and Clarke, V: Using thematic analysis in psychology. Qualitative Research in Psychology 2006; 3(2):77-101.

Lin-Su K, Lekarev O, Poppas DP, Vogiatzi MG: Congenital adrenal hyperplasia patient perception of ‘disorders of sex development’ nomenclature. Int J Pediatr Endocrinol. 2015; (1):9.

Davies, JH, Knight, EJ, Savage, A, Brown, J.,Malone, PS: Evaluation of terminology used to describe disorders of sex development. Journal of Pediatric Urology, 2011; 7(4):412-415.

dsd-LIFE 2013: https://www.dsd-life.eu/acronym-dsd-life/english/.

Vilain, E, Achermann, JC, Eugster EA, Harley VR, Morel Y, Wilson JD, Hiort O: We used to call them hermaphrodites. Genet Med, 2007; 9(2):65-66.

Simmonds, M: Was “variations of reproductive development” considered? Archives of Disease in Childhood, 2007; 92(1):89.

EuroPSI (European Network for Psychosocial Studies in Intersex/DSD): http://www.europsi.org.

Diamond, M, Beh, HG: Variations of sex development instead of disorders of sex development. Archives of Disease in Childhood, 2006; Electronic letter, 27 July.


 

Please feel free to comment on this article:

blog comments powered by Disqus


Editorial Offices:

Department of Family and Social Medicine
Albert Einstein College of Medicine/Montefiore Medical Center
Bronx, New York, 10461

Asociación Latinoamericana de Medicina Social (ALAMES)/Latin American Social Medicine Association:
ALAMES, Southern Cone Region, Cassinoni 1440 – 802, CP 11200 Montevideo, Uruguay.
ALAMES, Mexico Region, San Jerónimo 70 – 1, Col. La Otra Banda, CP 01090, México, D.F.