Truth Disclosure Discussion

DSD Terminology

[last updated 11 Aug 2011]

Introduction

The main aim of the 'intersex consensus' conference (October 2005, Chicago) was to agree on guidelines for improving the clinical treatment of intersexed infants/children. The guidelines were published in the form of a statement in 2006, as follows:

In a UK journal:

Hughes I.A., Houk C., Ahmed S.F. and Lee P.A: Consensus statement on management of intersex disorders. Arch. Dis. Child. 91: 554-563 (2006).

In a US journal:

Lee P.A., Houk C.P., Ahmed S.F., and Hughes I.A: Consensus statement on management of intersex disorders Pediatrics 118(2), (2006).

The conference had been structured as 6 working groups, each assigned a different topic to be discussed in break-out sessions before reporting back to a final plenary session. See Raising Awareness for more details. Terminology was not on the agenda and the new DSD scheme was introduced from the sidelines, during a rushed final plenary session, by US clinician Eric Vilain on behalf of the representative at the conference from the Intersex Society of North America (ISNA).

For details of how the new terminology works, and some pros and cons, see the '16 Aug 2006' link on the Announcements page.

Arguments in favour of DSD terminology

Some arguments advanced in favour of 'DSD' are:

a) Unlike ‘intersex’ (which can imply an identity, or a political stance, or a sexuality, and which is not popular with parents), DSD labels the medical condition and not the person;

b) DSD emphasises the need for proper treatment of some medical aspects, e.g. HRT, osteoporosis (presumably by characterising the conditions as 'disorders'?);

c) DSD transforms intersex conditions from “disorders like no other” to “disorders like many others”, which supposedly reduces stigmatisation.

Views favouring the new nomenclature can be found in the following sources:

Dreger A. D. et al: Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale. Journal of Pediatric Endocrin. & Metab., 18: 729-733 (2005).

Hughes, I., Nihoul-Fekete, C., and Thomas, B. (2007) 'Consequences of the ESPE/LWPES guidelines for diagnosis and treatment of disorders of sex development'. Best Practice & Research Clinical Endocrinology & Metabolism 21: 351.

Feder E.K. and Karkazis K: What’s in a Name? The Controversy over “Disorders of Sex Development”. Hastings Center Report 38(5): 33- 36. 2008.

Karkazis, K. and Feder, E.K: The art of medicine. Naming the problem: disorders and their meanings. The Lancet, Vol 372, Dec 13, 2008.

Feder, E.K: Imperatives of Normality: From “Intersex” to “Disorders of Sex Development”. In Morland, I. (Ed.) GLQ (Special Issue, Intersex and After), Vol 15, No 2, 2009.

Hughes, I.A. (2010) 'A quiet revolution'. Best Practice & Research Clinical Endocrinology & Metabolism 24:159 -162. A rather euphoric and decidely non-quiet trumpeting of the new terminology by one of the co-organisers of the Chicago conference. It ends with the thought that "The DSD nomenclature and its spin-offs have arrived at the high altar of medical practice".

Pasterski, V., Prentice, P. and Hughes, I.A. (2010). Impact of the Consensus Statement on Disorders of Sex Development (DSD). Best Practice & Research Clinical Endocrinology & Metabolism 24: 187-195.

Arguments against DSD terminology

Some arguments advanced against 'DSD' are:

a) The word ‘disorder’ implies there is something wrong, pathological, stigmatising. Intersex conditions are, in most cases, not life-threatening; but can be life-limiting because society, and medicine, treat them as disorders;

b) The word 'disorder' has a particularly nasty German equivalent (Störung) that carries overtones of ‘disturbed’.

c) The word 'Sex' was deliberately chosen for the DSD term, rather than 'Sexual', presumably with the aim of focusing on the biology of the body rather than on sexual orientation/practices. However in French-speaking countries there's no means of distinguishing between ‘sex development’ and ‘sexual development. The term ‘sex development’ can, in those countries, mean something entirely different and potentially offensive (related to sexual orientation, paedophilia, fetishism, masturbation etc.). And of course the DSD term is now being widely misquoted as Disorders of Sexual Development.

d) There was no consultation with those who are actually ‘intersexed’, especially outside the USA.

The new terminology had been hatched in years preceding the conference by members of a Consortium on the Management of Disorders of Sex Development. The Consortium says that its publications "incorporate the contributions of experts and stakeholders, including medical professionals, social workers, activists, parents and adults with DSDs". However, patient support/advocacy groups outside the USA were not consulted and had no input into the pre-Chicago discussions/proposals with regard to changing the terminology.

The 'consensus' element of the Chicago conference refers, or should refer (only) to the clinical treatment issues that were on the official agenda and were the main focus of discussions, and not to terminology issues (which weren't on the agenda). AISSG was not notified of the conference; and even the European patient representative (who'd been invited to attend on a one-to-one basis by one of the US clinicians involved) was not aware that the DSD terminology would be introduced to the conference. So there was no actual 'consensus' on this topic.

e) The rest of the world has to accept 'Disorders of ....' because US medical insurance companies wouldn't fund treatments for something like 'Variations of ....' (not sure why the patient's specific diagnosis, e.g. AIS, is not used for insurance purposes?).

Views opposing the new nomenclature (or discussions about the controversy) can be found in the following sources:

A series of letters was published in the Archives of Diseases in Childhood following publication of the Consensus Statement, criticising the new terminology and the way it was introduced.

Diamond, M. and Beh, H: (2006) Variations of Sex Development Instead of Disorders of Sex Development Pacific Center for Sex and Society.

O’Brien, M: (2006) What is in a Word? Organisation Intersex International UK.

Hinkle, C. (2006): Why is OII not using the term DSD or Disorders of Sex Development? Organisation Intersex International UK.

Gregori, N., Gallego, C. and García-Dauder, S. (2007) New Managements in Intersex Debates. Feminist viewpoint paper given at a conference, Past, Present and Future: from Women's Studies to Post-Gender Research, 14-17 June 2007, UMEA University, Sweden.

Reis E: Divergence or Disorder? The Politics of Naming Intersex Perspectives in Biology and Medicine, 50 (4), No. 4: 535-543 (2007). A discussion of nomenclature (hermaphrodite, intersex, DSD etc.) with a suggestion that 'Divergence' might be a better term to use than 'Disorder' in 'DSD'.

Spurgas, A.K. (2009) ‘(Un)Queering Identity: The Biosocial Production of Intersex/DSD’. In Holmes, M. (Ed.) Critical Intersex. ‘Queer Interventions’ series. Noreen Giffney, M. and O'Rourke, M. (series editors). Ashgate Press, UK.

Davidson, R. (2009) DSD Debates: Social Movement Organizations’ Framing Disputes Surrounding the Term ‘Disorders of Sex Development. Liminalis – Journal for sex/gender emancipation and resistance (http://www.liminalis.de/).

Diamond, M. (2009) 'Clinical Implications of the Organizational and Activational Effects of Hormones'. Hormones and Behavior, 55(5), 621-632, 2009. Here, Prof. Diamond writes::

It has been recommended that intersex conditions be referred to as Disorders of Sex Development (DSD) (Hughes et al., 2006. 'Consensus statement on management of intersex disorders'. Archives of Disease in Childhood. 91, 554-563.). This I refuse to do. I consider using the adjective disorder to be demeaning and pejorative to the individuals so identified. And so too does it seem insulting to members of the Organisation Intersex International, the largest intersex organization in the world (http://oii-usa. blogspot.com/2006/08/three-intersex-activists-defend.html). I use the abbreviation [DSD] but with the meaning of Differences of Sex Development (Diamond, M. and Beh, H: 'Changes in Management of Children with Differences of Sex Development'. Nature Clinical Practice: Endocrinology & Metabolism. 4, 4-5, 2009).

(The group "Advocates for Informed Choice", a legal group formed to protect intersex children, also uses DSD to mean Differences of Sex Development.)

Davis, G. (2011) “DSD is a Perfectly Fine Term”: Reasserting Medical Authority through a Shift in Intersex Terminology, in PJ McGann, David J. Hutson (ed.) Sociology of Diagnosis, issue of Advances in Medical Sociology, Vol 12, pp.155-182, Emerald Group Publishing Limited.

Georgiann Davis presents a study based on interviews with intersexed adults, and with parents, medical professionals, and intersex activists, and asserts that the shift from ‘intersex’ to ‘DSD’ allows medical professionals to reassert their authority and reclaim jurisdiction over intersexuality in light of intersex activism that was successfully framing intersexuality as a social rather than biological problem.

A clinical guidelines document, authored by a taskforce of UK experts in the field, was published in mid-2011): Ahmed, S.F. et al: UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development (Society for Endocrinology Clinical Guidance Article) Published online 10 June and in Clinical Endocrinology 75(1), 12-26, July (2011). It aimed to build on initiatives related to multidisciplinary care that came out of the Chicago conference. In a clinician-contributed section on psychological support for patients and families within the medical system, the document says the following:

Parents' and adolescents' initial recollections of conversations with professionals may have a long-lasting effect on them and their relationship with their affected child and health professionals. The use of phrases such as 'differences' or 'variations' in sex development may help to introduce the concept of the range of variation that may occur in sex development.

So here, just a few years after the introduction of a new nomenclature that is supposed to be more acceptable to parents and patients, we have clinicians implying that other clinicians should not use the official terminology in front of parents and adolescents, and that instead of using ‘disorders’ they should use some of the very words (‘differences’ or ‘variations’) that opponents of the DSD scheme had been suggesting!