Wednesday, August 13, 2008

Some problems with the new terminology for intersex

by OII's Advisor on Biosex Variations, M. Italiano, M.B.B.S. (A.M.)
© 13 July 2008

I think that the term DSD is a problem for a few reasons. Traditionally, sex development was the third of a group of three classifications of defining sex criteria in general. Sex determination was the first and was involved in describing genetic factors which were determinative, i.e. involved in determining sex. Sex differentiation was the second and involved gonadal sex, describing a process which results in differing (but complementary) gametes. The third was sex development. Development meant the process with which phenotypic sex characteristics (genitalia, bodily habitus) would be active (male development) or "lack" development by "default" (female development). Thus, when so-called disorders or so-called anomalies were described in most texts, they would be divided into those of sex determination if it involved genetic sex, sex differentiation if it involved gonadal sex, and sex development, if it involved phenotypic sex. I believe that with the "catch all" term of “development” in DSD, we have minimized the importance and understanding of the processes of both determination and differentiation. In an individual with Swyer's Syndrome, who would be classified as having an XY DSD, if they lack the SRY testis determining gene, we can't easily describe their female phenotype as disordered (lacking order), since we would typically expect a female phenotype in the absence of this gene. If the deletion extended and included a deletion of more of the Y chromosome, it becomes unclear as to whether this individual would be put in a classification of Swyer's (an XY DSD) or Turner's (which is a "chromosomal DSD"). Again, by placing all cases of intermediate sex into a category of "development", we have downplayed the factors of both determination and differentiation. One of the head authors of the Consensus has indeed changed the word development to differentiation. .PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

(Notice also, the substitution of the word "sex", with the word "sexual", which may further compound the issue).
Secondly, in addition to leaving out in the descriptor, determination and differentiation, there is a further difficulty which I see in the use of the term DSD in the way it is suggested in the Consensus statement. I believe that the use of terms such as "XX DSD" or "XY DSD" is insulting, very much like using the terms female pseudohermaphrodite and male pseudohermaphrodite. Many children even know that XY is used to refer to male and XX to female. For an XY CAIS phenotypic female to learn she has an "XY DSD", is basically to call her a "male”, if even more covert sounding than a "male pseudohermaphrodite". In this regard, the TYPES of classifications of DSD have also received criticism, which I believe is well justified. 2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_RVDocSum

A third problem I see with using DSD is that that the word “development” is used
a) as a long-term span definition and
b) that it is used to describe personality, behavior, cognitive thought processes, and a notion of a prescribed expectation.

For instance, there are countless reports on intersex, which refer to individuals who have not met "DEVELOPMENTal milestones". These milestones, for the most part are expectations which have been measured and ascribed to persons and samples, which consist largely of persons or groups of persons who would not be classified as having a "DSD". This has the potential for abuse, in that it can easily be used to shift the domain of people who have a "DSD" to that of psychiatry and clinical psychology, whereby the individual is then further labeled with a mental disorder. In what way can we reasonably expect milestones, such as social skill development and body image development to occur in a phenotypic female with 5 Alpha reductase 2 deficiency who at puberty virilizes, or an individual with 46 XX CAH and ambiguous genitalia who has the co-existence of phenotypic masculinizing and feminizing characteristics? The temptation to psychopathologize is so great, that I wonder if indeed this was not part of what went in to the formulation when the word “development” was used. It seems to me that special legal measures should be implemented to protect individuals who "have a DSD" from any attempts by professionals to "cross-pathologize" such individuals with a mental disorder based upon psycho-social developmental processes. Insurance companies should be prohibited from using information for coverage benefits. For peer support, I do not think it is helpful for someone with CAIS (or other conditions usually presenting after puberty) to mobilize for or against "justifying" the psycho-social developmental milestones of those with a "DSD" which have earlier manifestations on body image and social interaction. Lastly, the term development is often used in regards to psychosexual or gender development. No studies have correlated basal brain area biology to gender outcomes in "DSD". Law should respect science, so that a physician needs to provide in writing that the assignment may not match psychosexual or gender outcome. A license is to protect the public, the consumer, not the professional. My next article will be why disorder is not a good term.