Sunday, September 14, 2008

Dreger and DSD - The redefining of intersex as a genetic birth defect

The Bailey/Dreger Team
by Curtis E. Hinkle

Alice Dreger seems more concerned about pro-choice rights than intersex rights. Conflating the right of a woman to choose with intersex as a genetic birth defect can result in not just the choice to have a baby but the choice of which babies are worth having at all. This can eventually become a form of
eugenics because some groups are considered as more valuable than other groups and modern methods are used to screen them out of the population. We in OII are going to resist this. We look forward to a real debate and to real freedom of speech. Would it not be reasonable to let intersex people speak about these issues instead of a woman who is not intersex, Alice Dreger, who is more interested in abortion rights than our rights?

To briefly understand Dreger's close association with DSD as a birth defect:

There are three main figures involved. Dreger is central to each. They are: Dr. Eric Vilain, J Michael Bailey and Dreger herself. Vilain is in the Penn State group (Network on Psychosexual Differentiation) and a board member of ISNA (the Intersex Society of North America). Bailey is in the Penn State group with Vilain and at Northwestern University with Alice Dreger. Dreger is very closely connected with ISNA and Northwestern University where Bailey is and has devoted a large part of her recent career in defending Bailey.

Bailey works and has worked very closely with Dr. Eric Vilain who just recently in a June Scientific American article took credit for coming up with the term "Disorders of Sexual Development" (His choice of words).

He states very clearly what the focus is on:

"Ultimately individuals who are intersex will each have their diagnosis with a GENETIC name."

From the Scientific American article:
Q. "At a recent international meeting to discuss management of people with genital and gonadal abnormalities, you successfully pushed for a change in nomenclature. Instead of using terms such as "hermaphrodite" or even "intersex," you recommended that the field use specific diagnoses under the term, "disorders of sex development." Why did you and other geneticists feel a nomenclature change was necessary?

A. For the past 15 to 16 years now, there really has been an explosion in the genetic knowledge of sex determination. And the question being, how can we translate this genetic knowledge into clinical practice? So we said maybe we should have a fresh approach to this.

The initial agenda was to have a nomenclature that was robust but flexible enough to incorporate new genetic knowledge. Then we realized there were other problems that were in fact not really genetic, but that genetics could actually answer them. Ultimately individuals who are intersex will each have their diagnosis with a genetic name. It's not going to be some big, all-encompassing category, like "male hermaphrodites." And that's much more scientific, it's much more individualized, if you will. It's much more medical.

Bailey was one of the original presenters when this terminology was first ressurected at the Penn State group which is researching psychosexual differentiation in intersex and gender variant people. The whole disorder concept with Eric Vilain and Bailey and others was resurrected in this network funded by the NICHD. This group which is funded by United States taxpayers has now made most all of their documents password protected.

1) J Michael Bailey is a central figure in the Network on Psychosexual Differentiation at Penn State which resurrected the Disorder terminology in a psychosexual context. He spoke on different occasions at their meetings specifically on intersex and helped formulate their mission which includes the following:

"Develop or refine animal paradigms that model and help to explain the genetic, neuroendocrine, and social processes underlying both normal sex-typed behaviors and pathological behaviors observed in individuals with intersex conditions or gender-atypical behavior."
Right now CAH and XXY and other intersex variations are on brith defect registries and they are there precisely because the genetic screening can find them. The Consensus statement makes it very clear that the intent of the new DSD model is to determine the GENETIC origins of all these conditions just as Vilain has stated clearly in his recent interview with the Scientific American. The DSD Guidelines and Consensus Statement are firmly planted in the genetic and eugenic model of intersex as a birth defect.

Advances in identification of molecular genetic causes of abnormal sex with heightened awareness of ethical issues and patient advocacy concerns necessitate a reexamination of nomenclature.1 Terms such as "intersex," "pseudohermaphroditism," "hermaphroditism," "sex reversal," and gender-based diagnostic labels are particularly controversial. These terms are perceived as potentially pejorative by patients and can be confusing to practitioners and parents alike. We propose the term "disorders of sex development" (DSD), as defined by congenital conditions in which development of chromosomal, gonadal, or anatomic sex is atypical. The proposed changes in terminology are summarized in Table 1. A modern lexicon is needed to integrate progress in MOLECULAR GENETIC aspects of sex development. Because outcome data in individuals with DSD are limited, it is essential to use precision when applying definitions and diagnostic labels.3,4 It is also appropriate to use terminology that is sensitive to the concerns of patients. The ideal nomenclature should be sufficiently flexible to incorporate new information yet robust enough to maintain a consistent framework. Terms should be descriptive and reflect GENETIC ETIOLOGY when available and accommodate the spectrum of phenotypic variation. Clinicians and scientists must value the nomenclature's use, and it must be understandable to patients and their families. An example of how the proposed nomenclature could be applied in a classification of DSD is shown in Table 2.

Consensus Statement on Management of Intersex Disorders
PEDIATRICS Volume 118, Number 2, August 2006

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