Tuesday, September 16, 2008

DSD: North American Medical fascism and manufacturing consent

by Curtis E. Hinkle

One of the most important questions to ask concerning the controversy surrounding the term “DSD”, Disorders of sex development, as a replacement for intersex is a simple one. Why do we need to have a name at all? Why do we need to have a diagnosis at all? Other important questions include who is naming us and for what reasons? Does this have anything to do with us at all? Should it even concern us?


In the last several years, many people who are not intersexed have been working to come up with a new term to replace the term “intersex”? It is interesting that we in OII have found almost no intersex people that were actively involved in this search for a new term. We have found almost no intersex people who had previously been writing articles and scientific justifications for replacing the term intersex with the term “Disorders of Sex Development”. We therefore conclude that the search for a new term was something of intense importance to people who are not intersexed but of little or no importance to intersexed people themselves. The only exception that I can document is Cheryl Chase, the one intersexed person who co-authored the following article with Alice Dreger and Dreger’s husband, Dr. Aron Sousa.

“Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale”, Alice Dreger et al, Journal of Pediatric Endocrinology & Metabolism, 18. (729-733 (2005).
http://www.medhelp.org/ais/PDFs/Dreger-Nomenclature-2005.pdf
In this article, the authors propose replacing the term hermaphrodite and the 5-sex system which divides humans into females, males, true hermaphrodite, male pseudohermaphrodite and female pseudohermaphrodite with the term “disorders of sex differentiation” (later changed to disorders of sex development) because this would work better in a medical context. What is so problematic about this article which was seminal in the shift from intersex to DSD is that there is no challenge to the assumption that intersex variations need to have a medically accurate name at all. The whole article is based on the assumption that sex variations are indeed pathological and require treatment. However, the article gives no proof at all for such an assumption and that is the serious contradiction in the arguments put forward in the article. Any serious medical conditions that a person who is not standard male or female has are exactly the same medical conditions that standard males and females have. The more important question would have been to focus on medical conditions that actually do affect people who are intersex and explain how these might require slightly different medical treatments than in a person who is not intersexed. However, this article assumes that one’s sex variation is the disease to be treated and never challenges that assumption and it concludes by suggesting that one approach would be to use etiology-based diagnoses. (1)


For years both Dreger and Chase stressed that intersex was not a pathological condition but a biological variation. “Intersex is a socially constructed category that reflects real biological variation.” (2) If this is so, it is also obvious that the shape and size of one’s nose is also a biological variation just as the size and shape of one’s clitoris. If a person wishes to change the size and shape of one’s nose, that is available to them and there are surgeons who will do these operations for them. There is no group I am aware of that is coming up with an umbrella term to include all nose variations in the population which would make all these variations a medical pathology and which could justify changing the shape of noses without the consent of the person with the nose. Parents can still have cosmetic surgery on a child’s nose if they feel it will prevent their child from functioning well in society. There could be an argument made that nose shape and size could be more stigmatizing than the size of one’s clitoris or penis because we usually present ourselves in public with our noses exposed.

Despite the good intentions that are expressed in this article, the medical emergency that intersex supposedly represents is what is the focus for justifying the change of the terminology. In this article, the emergency now is coming up with a medical diagnosis which will classify all variations of sex development so that people with this “medical emergency” can get better treatment. But shouldn’t the more basic question be to ask why this is being treated at all? That is not the case.

Dreger’s article promotes the use of the old-time medical phrase “disorders of sexual differentiation" (later changed to “development”) – using the straw man of “hermaphroditism” as if it were the word being replaced (instead of intersex being the word they wanted to replace):

In conclusion, we suggest the language of ‘hermaphroditism’ and ‘pseudohermaphroditism’ be abandoned. One possible alternative . . . is to use instead . . . the umbrella term “disorders of sexual differentiation”. Such an approach would have the salutary effects of improving patient and physician understanding and reducing the biases that are inherent in the use of the current language of ‘hermaphroditism’. – Dreger et al.


That old medical terminology had been adopted in 2003 in the mission statement of "The Network on Psychosexual Differentiation" and the Johns Hopkins. It was that NICHD group of researchers, funded by NIH, who are behind the Northwestern/Penn State DSD Consortium that had hired Dreger:
http://nichdnet.psych.psu.edu/
http://nichdnet.psych.psu.edu/aims.html
It would appear that the Johns Hopkins Medical University (responsible for all the traumatizing experiments on intersex children by Dr. John Money and the theories he developed which continue to justify irreversible sex assignment surgeries) has a vested interest in protecting itself from the possible litigation that could have been directed against them and it was the Johns Hopkins Medical University which started using the "disorder" terminology even before the NICHD. It is also interesting to note that the author and central figure in this shift in terminology, Alice Dreger, is the associate editor of one of the official publications of the Johns Hopkins University Press. (3)

There seems to be a conflict of interest on Dreger’s part. And if you read her articles closely this conflict of interest will become more and more evident. What appears at first to be a move towards depathologizing intersex starts being seen for what it really is – a way of pinning down intersex and ALL variations of sex differentiation as an illness.

In a recent lecture at the Kinsey Institute that Alice Dreger entitled: "No Matter How You Slice It? Parsing Intersex", Dreger stated:

“A couple of people at my Kinsey talk pressed me about the terminology and asked me to work more on trying to find a new, better term. What about, for example, "variations of sex development," as some have suggested? Honestly, I don't see that term flying in the medical system; I've asked about it, and it doesn't go anywhere. Part of the reasonable fear among medical professionals is over-de-pathologizing sex anomalies. . .” (4)

Sophie Siedleberg responded to Dreger's pathological defense: "Reasonable fear of de-pathologizing sex anomalies? Like what is that supposed to mean? That doctors are upset because some people object to terminology that in law allows the doctors to slice, dice and rotate children on a spit or something?" (5)

Is there a need for name for sex variations at all? Many people will not feel there is and feel comfortable with the terms male and female but to others the term intersex appears helpful and has been working well for many of us. It is to be noted that no one is imposing this term on anyone. It is not a legally imposed sex and intersex activists are not working to impose this term on people in a medical context either. Nothing could be further from the truth. People born with sex variations are free to consult doctors for problems which affect their health but does that give them the right to work to impose medically defined pathologies on all people who are born with sex variations who see their body as a natural variation, not a medical emergency? The fact is that there are almost no intersex people involved in doing this. It is people like Dreger who is not intersex and medical doctors and parents who are behind this and we should hold them accountable and ask them why they want to humiliate us and pathologize us.

Footnotes:

1. Page 733. “Changing the Nomenclature/Taxonomy for Intersex: A Scientific and Clinical Rationale”, Alice Dreger et al, Journal of Pediatric Endocrinology & Metabolism, 18. (729-733 (2005).
2. What is intersex? http://www.isna.org/faq/what_is_intersex
3. According to the official site for the journal Perspectives in Biology and Medicine, the Associate Editors are Alan N. Schechter and Alice D. Dreger.
http://www.press.jhu.edu/journals/perspectives_in_biology_and_medicine/editorial.html
(4) Dreger, Alice.
Why “Disorders of Sex Development”? (On Language and Life)
http://www.alicedreger.com/dsd.html
(5) Siedlberg, Sophia. Treestumps and Broomsticks. http://www.intersexualite.org/Siedlberg.html#anchor_12

Monday, September 15, 2008

Disordering the lives of children

by Curtis E. Hinkle

We are no longer called hermaphrodites. We are no longer called intersexed. We are all men and women with disorders of sex development according to many of the medical experts who have managed our lives over the past decades. We now have a new Consortium for the Management of Disorders of Sex Development and they are proposing to manage the lives of future children born with this disorder. What are the risks involved with this change in terminology? I think there are many.

Is intersexuality normal? No. However, it is totally natural and not life threatening in most cases. There are so many different phenomena in our natural world that are not normal. Our world is filled with people who are not normal in one way or another. However, what criteria do we use to judge whether these natural phenomena are disorders or not? What criteria do we use to determine if a natural variation in the human population is good, bad or neutral? I don’t have the answer to these questions because there seems to be no precise answer. It varies with the person making the judgments. I feel that there are two main questions to ask before judging behaviors, variations and other phenomena in the natural world. Are they harmful to society and if so why? Do they pose a serious risk to the individual and if so why? If the reason for the risk to the individual is simply society’s reaction to the issue and not any real threat to that society, then is it the individual who should be deemed disordered or the reactions of those judging the individual? I think that it would be most likely that the problem is within the one judging the individual, not the individual being judged.

Now that the managers of disorders are ready to start treating children with these disorders of sex development, I have a few questions about how this pejorative terminology will actually be explained to the child and the consequences of such pathological views that will be used to explain not only the physical sex of the child but the implications this will have on all aspects of the child’s life associated with sex, those being their gender identity, gender role, sexual orientation and actual health needs.

Once a parent is told that their child has a disorder, they most likely will assume there must be some treatment to either cure or manage this disorder. The consortium is not holding out a cure because this is not something that can be cured or needs to be cured in my opinion. However, they will become managers along with the parents. Are they becoming managers just of the child’s body which is the initial reason for the diagnosis? No, they are becoming managers of all aspects related to sex in the child’s life, their gender and their orientation. What starts out as a physical disorder to be managed is now viewed as a possible psychological problem with other disorders that could become evident if the child does not comply with the gender imposed and also we have the undercurrent of homophobia. Some of these managers may inform the parent that their child is more likely to be homosexual as a result of the disorder which could make a lot of parents think that the homosexuality is also a disorder, part of the original diagnosis when told their child has a disorder of sex development.

There are many people who do believe that homosexuality is a disorder and they are involved in research to prove it. They may not use the word “disorder” at this time but when links are made with intersexed children, it would be much easier to introduce this concept of homosexuality being a disorder also. Once you decide that certain variations of sex development are disorders, then most behaviors closely connected with that group could be viewed as part of that disorder.

When would a manager of the child’s disorder reveal to the patient that they had a disorder of sex development? How could this be done in such a way that the child does not feel that puberty, identity and other essential aspects of their lives would not be disordered also? I don’t think there is. The very term “disorder” implies that compliance with the protocols will be essential not to be disordered, not to have a disorderly life and that the managers are the only ones who have the solution. But they are not living in the body of the child. They are not living in the mind and heart of the child. Children do not have the words or the experience to understand sex, gender and orientation.

When speaking with children, one needs to keep it simple. This is why I like Dr. Hazel Beh’s and Dr. Milton Diamond’s suggestion that we use the term variation. It is easy for a child to grasp that boys and girls come in all varieties. They can look around them and see that there are all kinds of boys and girls but that each kind or variety is not necessarily a bad thing or a good thing. We are just all different. What is damaging to a child is to feel that they are not just a different kind of boy or girl but that they are a disordered or defective boy or girl. This has very serious implications for the child and could make their future development even more stigmatic and traumatizing while interacting with those in control of their bodies.

Every feeling the child has could be internalized as part of the disorder and something else that needs management and which is shameful. Not feeling like other boys or girls, not looking like other boys or girls and not having a sexual orientation that is like most other boys or girls could be and most likely will be interpreted by the child as part of their original diagnosis, part of their disorder of sex development.

Welcoming children into our lives is a wonderful gift for many of us. Watching them grow and holding out a helping hand not only enriches our lives but builds character and strong bonds which overall helps society as a whole. Let’s give intersexed children the assistance they need to live in a world that does not understand them and make sure we do not simply manage them and further damage them with pathological, pejorative terms which make them not only feel different but defective and defective in one of the most essential parts of what our society has deemed all people must be to be fully human – their sex.

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.

http://www.ncbi.nlm.nih.gov/pubmed/18574210?ordinalpos=3&itool=EntrezSystem2 .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.

http://www.ncbi.nlm.nih.gov/pubmed/17934671?ordinalpos=35&itool=EntrezSystem 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.

Friday, August 8, 2008

Ambiguous Medicine and Sexist Genetics: A Critique of the DSD Nomenclature

By M. Italiano, M.B.B.S. (A.M.) and Curtis E. Hinkle
© Aug. 8, 2008

Many intersex persons around the world and their allies are concerned about the new nomenclature, DSD or “Disorders of Sex Development”, which has been endorsed by the Chicago Consensus (1) to replace the term “intersex”. We believe that the categories proposed are not only demeaning, but also scientifically flawed.

The age of chromosomes

The DSD nomenclature uses chromosomes, instead of gonads, as the most important classifier of an individual's sex, such as “46,XY DSD” and “46,XX DSD”. This is no more helpful than using male pseudohermaphroditism or female pseudohermaphroditism which was based on gonads. (2) Instead of male pseudohermaphroditism and female pseudohermaphroditism, the new DSD nomenclature proposes “46, XY DSD” and “46, XX DSD” as replacements for the former taxonomy.

Furthermore, what was called true hermaphroditism is now dichotomized to fit more neatly within the binary. True hermaphroditism used to be called “true” because it meant that an individual had both ovarian and testicular tissue and gonads (ovaries and testicles) were considered to be the “true” determiner of one’s sex. Of course the word "true" was problematic because it suggested that all other forms of “hermaphroditism" were not legitimate, only “pseudo conditions”. Also, using the term “hermaphrodite” as a word to describe a person with an intersex variation has often been criticized as insulting and inaccurate. However, by replacing true hermaphroditism with "ovotesticular DSD", we still have another problem. The DSD nomenclature now wishes to divide "ovotesticular DSD" (formerly true hermaphroditism) into “46, XY ovotesticular DSD”, “46, XX ovotesticular DSD”, or “chromosomal DSD” (of “46,XX/46,XY” chimerism or “45, X/46,XY” mosaic types). In effect, it gives an individual in the latter case two types of DSD, an “ovotesticular DSD”, and a “chromosomal DSD”. Also, we see the division based on chromosomes, which again exposes the preeminence of chromosomes as the “true” markers of an individual’s sex. Further, by combining “ovostesticular DSD” with a chimeric or mosaic karyotype, as it does, it also fails to provide a clear classification of so-called “ovotesticular DSD” which has 3 or more cell line types, isochromosomes, inversions, or ring chromosomes in the karyotype.

For individuals who have both 46,XX in some cells and 46,XY in other cells, and who are referred to as having a "chromosomal DSD" of "46,XX/46,XY(chimerism)" type, it is not uncommon for them to have male anatomy only (3) or female anatomy only (4) and they may also be fertile. In this new nomenclature they would be “diagnosed” as having a "chromosomal DSD" despite any practical relevance for them. Furthermore, although the DSD nomenclature is intended to be representative of congenital conditions, there are individuals who have become 46,XX/46,XY because their twin’s cells make up part of their own karyotype (5), or because an individual who is 46,XX received a bone marrow donation from someone who is 46,XY, as well as by many other means (6). In fact, a pregnancy may also lead to "false positives" for a DSD since fetal cells end up in a woman’s bloodstream. (5)

Likewise, individuals with a 45,X/46,XY karyotype are listed as having a “chromosomal DSD”, but with a parenthetical “mixed gonadal dysgenesis” or “ovotesticular” DSD. This is also confusing since many 45,X/46,XY individuals do NOT have mixed gonadal dysgenesis or ovotesticular tissue. Again, some have only typical male or female anatomy (some being fertile as such), and the XO cells are known to disappear during various stages of development. (7) Thus, predicting this type of “chromosomal DSD” in prenatal screening has been demonstrated to be hampered by a high rate of erroneous results, has provided unnecessary cause for alarm (by projecting birth defects which do not exist), has led to unwanted elective abortion, and is considered a serious problem in clinical genetics. (8)

Another problem is that the DSD proponents have misunderstood basic genetics (or intentionally distorted the information) and have assumed that XY chromosomes indicate that testicular tissue is expected. This assumption leads to another error in the new taxonomy because when gonadal dysgenesis is classified as a “46,XY DSD”, (see Table 2 in reference 1) DSD proponents refer to it (parenthetically) as "testicular dysgenesis". This is misleading and ambiguous because many individuals with 46,XY gonadal dysgenesis actually have OVARIAN dysgenesis. (9) It has been known for over 30 years now that in the presence of an unaltered Y chromosome, but in the absence of substances which would cause testicular differentiation and development, that ovaries start to form, not testicles. (reviewed in ref. 9). It is therefore deceptive to classify 46,XY gonadal dysgenesis as 46,XY testicular dysgenesis because testicular dysgenesis is the result on some occasions but at other times the result is ovarian dysgenesis. The type of treatment indications for dysgenetic testicular tissue may differ from that of dysgenetic ovarian tissue, and thus may unnecessarily confuse clinicians. Furthermore, the preeminence of chromosomes in this taxonomy is apparent and the idea that XY chromosomes somehow are the real “male” sex marker is the result of sexist genetics which produces more ambiguous medicine.

A basic problem with the DSD nomenclature is that it divides all the “disorders” into groups based on what are erroneously known as “sex chromosomes”. (10) This sexist interpretation of genetics, typical throughout this new nomenclature, leads to ambiguous medicine because there are individuals who have male anatomy only but have what appears to be XX chromosomes and are diagnosed as having a "46,XX DSD". Likewise, there are individuals who have female anatomy with what appears to be XY chromosomes and are diagnosed as having a "46,XY DSD". If these apparent XY individuals have a piece of the Y chromosome missing, (such as would include the SRY testis determining gene) they are still referred to as having a “46,XY DSD”, which is factually impossible since they are not XY, but X plus only part of the Y. Likewise, someone who is called XY (but in reality has an extra copy of an X chromosomal gene called DAX1) is also put in the category of having a "46,XY DSD", even though this is impossible, since they are not XY, but are instead X (PLUS another piece of an X)+Y. Likewise, individuals who appear to be XX, but are actually XX (PLUS the Y chromosome-specific SRY gene) are listed as having a "46,XX DSD" and a disorder of gonadal (ovarian) development, both of which are technically inaccurate. The fact that the DSD proponents (1) have put a note next to some conditions which indicates whether a deletion or addition of some X or Y chromosomal material exists, further demonstrates the inconsistency of their listing these conditions in the binary categories of “46,XY DSD” or “46, XX DSD” and not that of “chromosomal DSD.” In these regards, the DSD terminology is in violation of the principles and accepted diagnostic nomenclature used by clinical and molecular cytogeneticists. (11) Why didn't the DSD proponents put these in the "chromosomal DSD category"? One apparently needs an entire extra "sex chromosome" or to be lacking one, in order NOT to be put in the binary "EITHER XX or XY" category.

The DSD nomenclature is ambiguous and sexist in its understanding of genetics and it appears that this is necessary in order to preserve an "artificial binary". People who have portions of the X or Y chromosome missing or added are neither XX nor XY. The DSD system again here is flawed. Technically, CAIS individuals do not have a so-called "46,XY DSD" (even though the proponents state that they do) because the androgen receptor gene on the X chromosome is altered so that, in fact, they are only "X"Y. The androgen receptor is certainly involved in sex development. Thus if it is not there or is altered, it is ambiguous and misleading to call these individuals XY. It is equally ambiguous and misleading to call CAIS individuals “genetic males”. Yes, they have the SRY gene and a typical Y chromosome, but the X linked gene sequences for androgen "action" are not something that they "have". The same is true for an XY individual who has a female anatomy only, unaltered X and Y chromosomes, but an alteration on one of the many genes on one of the so-called "non sex chromosomes" (autosomes) which are certainly sex determining.

Sophia Siedlberg, Genetics Advisor to the Organisation Intersex International, came up with a polygenic model which explained the role of genes, not chromosomes, in sex determination. (12) This model has been misappropriated by others who don't know how to interpret it correctly. We can be quite sure, that barring an environmental cause (such as a teratogen), if we have an XY individual who does not appear to be a male, but instead appears female or intersex, that this person CANNOT be a “genetic male”, “chromosomally a male”, “genetically a male” and vice versa for individuals who have XX chromosomes. How do we know this? By the simple rule of basic genetics, that

GENES (+ environment) = PHENOTYPE (observable trait)

Thus, the DSD model based on "sex chromosomal" divisions has failed. By using the umbrella term “development”, it has also misapplied the knowledge base from the field of (sex) “differentiation” and conflated it with that of “development”. (13) It is ambiguous and sexist (in that it prescribes what sex one should be and not what sex one is and it perpetuates gender and sexist stereotypes based on chromosomes). It promotes confusion and oppression. It is NOT scientific. It simply uses scientific terminology in such a way that it confuses those who have little knowledge of genetics and biology. In so doing, it victimizes intersex people while offering “unlimited immunity" to medical and psychological professionals who continue FORCED sex assignments, FORCED sex reassignments, and FORCED gender expression expectations.

DSD makes the central health issue one’s sex

A second big problem with the DSD Consensus is that it largely ignores the health issues of intersexed individuals. With its emphasis on “sex” divisions based on chromosomes, they have persons with non-intersexed conditions like labial adhesions, cloacal exstrophy of the bladder and absent penis in an otherwise typical male, (or absence of a vagina in an otherwise typical female), mixed in with endocrine conditions, such as congenital adrenal hyperplasia, or mixed in with other organ system conditions, such as Smith-Lemli-Opitz Syndrome, and Turner's syndrome. These are then categorized as "sex development disorders", thus taking this "distant commonality" of one symptom, i.e., sex, and placing all of these disparate conditions as a disorder of one’s sex, while the predominant health issues become categorically "secondary" and likely to be ignored by clinicians.

DSD lacks clinical relevance

Even without considering the fact that the DSD Consensus largely ignores health issues, its taxonomy is in many cases irrelevant for the purposes of clinicians, especially those with subspecialties. An XX male with testes, a penis, and no female reproductive organs, who finds out at the age of 30 that his chromosomes are atypical after an infertility check, is in the same category as an otherwise typical female with ovaries and a uterus who has vaginal atresia. Both have a “46,XX DSD”. The same holds true for a male, typical in every way but with isolated hypospadias (classified as having a “46,XY DSD”), whose clinician finds that they have given their prior patient, an XY female with streak ovaries, uterus, and vagina who has given birth after embryo donation the same diagnostic classification of “46,XY DSD”. Again, ambiguous diagnoses lead to ambiguous treatment implications and vice versa. This is ambiguous medicine.

Gender conformity based on sexist genetics

With disorders of sex development, which sounds like “sexual development” (and can be confused with psychosexual development or psychosexual disorders), we now see a pathologizing of gender, gender identity, gender role, sexual orientation, and its ties to (re)assignment. People with a so-called DSD, especially in the binary XX or XY categories, are expected to conform in the above categories according to a binary gender expression, as indicated by the expectations of the DSD category, as well as the whim of the person who enforces the assignment or re-assignment. Those who reject such enforcement can be labeled mentally disordered, and treatment can be instituted or re-instituted at the whim of professionals, and this can be enforced legally.

DSD is about ambiguous medicine, sexist genetics, body control, and mind control. It certainly is not a client centered consensus statement. The fact that almost no intersex people had input into this consensus is glaringly evident.

In effect, we have moved from the “age of gonads” to the “age of chromosomes” even though it has been established that "sex chromosomes" as portrayed do not determine one’s sex. (10) This is based on prescriptive notions about genetics, not a descriptive understanding of the role of chromosomes in sex determination. Genes, not "sex chromosomes", determine sex, and most of the genes involved are not on the X and Y chromosomes. They are on the autosomes.

It appears to the authors of this article that the DSD nomenclature misinterprets genetics based on a sexist, binary male/female model and in so doing, it has erroneously pathologized and stigmatized intersex people in order to try to preserve the heterosexist male/female hierarchies that justify the oppression of many classes of people, not just those who are intersexed.

REFERENCES
1) Hughes, I.A. et al. Consensus statement on management of intersex disorders. J. Ped. Urol., 2006, 3:148-162.
2) DamianiI, D. & Guerra-Júnior, G. As novas definições e classificações dos estados intersexuais: o que o Consenso de Chicago contribui para o estado da arte? Arq Bras Endocrinol Metabol. 2007, 51: 013-7.
3) Gencik, A. et al. Chimerism 46,XX/46,XY in a phenotypic female. Hum. Genet., 1980, 55: 407-408.
4) Sudik, R. et al. Chimerism in a fertile woman with a 46,XY karyotype and female phenotype: Case Report. Hum. Rep., 2001, 16: 56-58.
5) Schoenle, E. et al. 46,XX/46,XY Chimerism in a Phenotypically Normal Man. Hum. Genet., 1983, 64: 86-89.
6) Ford, C.E. Mosaics and Chimaeras. British Med. Bull, 1969, 25:104-109.
7) Chang, H.J. et al. The phenotype of 45,X/46,XY mosaicism: an analysis of 92 prenatally diagnosed cases. Amer. J. Hum. Genet., 1990, 46: 156-167.
8) Robinson, A. et al. Prognosis of prenatally diagnosed children with sex chromosome aneuploidy. Am J. Med. Genet., 1992, 44: 365-368.
9) Wachtel S.S. & Simpson J.L. Sex Reversal in the Human. In Wachtel S.S. (Ed.) Molecular Genetics of Sex Determination., 1994, 287-309. Academic Press, Inc.
10) Italiano, M The Scientific Abuse of Genetics and Sex Classifications. Manuscript published July 17, 2008 © Organisation Intersex International.
11) Schaffer, L.G. & Tommerup, N. ISCN 2005: An International System for Human Cytogenetic Nomenclature (2005): Recommendations of the International Standing Committee on Human Cytogenetic Nomenclature., 2005. Karger, S.C. Publ.
12) Siedlberg, S. The Gender Genital Gene Genie. Manuscript published 2001.
13) Italiano, M. Some problems with the new terminology for intersex. Manuscript published July 13, 2008 © Organisation Intersex International.

Thursday, July 17, 2008

THE SCIENTIFIC ABUSE OF GENETICS AND SEX CLASSIFICATIONS

Available in PDF: Click here
By M. Italiano, M.B.B.S. (A.M.), Advisor on Biosex Variations, Organisation Intersex International
© July 17, 2008

It is a common misconception amongst many professionals and non-professionals alike, that the so-called “sex chromosomes” determine one’s sex. Typically in humans, there are 23 pairs of chromosomes with a total number of 46 chromosomes. Twenty two pairs are called autosomes and one pair is called sex chromosomes. They were designated as such because the pair found in males and females typically differed. Males usually had one X and one Y chromosome and females usually had two X chromosomes. Thus, it was believed that X and Y chromosomes determined sex, and that the autosomes (all the other “chromosomes”) determined non-sex physical characteristics.

However, correlation does not equal causation. There are actually more genes on the autosomes, and not the so called “sex chromosomes”, which are involved in sex determination (and sex differentiation and development), than there are on the so-called sex chromosomes. In fact, a gene on the Y chromosome (SRY) is one of the few genes on this chromosome which even has a role in sex determination, and its role in sex determination is indirect. It turns on genes on other chromosomes which more directly determine sex. The X chromosome also contains only a few genes which have a role in sex determination, but again, often in a very indirect way, through regulating autosomal sex genes (not on the “sex chromosomes”) which directly determine sex. In fact, almost all of the X chromosome genes are inactivated on the second X chromosome in XX individuals, making XX and XY individuals roughly equal in X chromosome gene expression. As the X chromosome is necessary for survival, it becomes clear that the X chromosome is not a female chromosome. Furthermore, the X and Y chromosomes pair during gametogenesis and exchange chromosomal material with each other in a process called crossing over. As a result, part of an individual’s X chromosome was part of a Y chromosome, and part of an individual’s Y chromosome is part of an X chromosome. These areas are known as pseudoautosomal, mainly because the “sex chromosomes” are labeled as such.

There are in fact sex determining genes on many of the chromosomes, making the term “sex chromosomes” as such a misnomer. In the presence of an XX chromosome type with no Y specific chromosomal genes, an embryo still can become a male with testes, a penis, prostate, with no female organs, and the testes can initiate spermatogenesis (1). Likewise, in the presence of an XY chromosome pattern, with totally normal X and Y chromosomes, an individual can still become a female, with ovaries, a uterus, Fallopian tubes and a vagina, with no male organs (2, 3). These XY females can deliver a normal baby, both with or even without assisted reproductive technologies (2, 3). This is because genes on the autosomes may still be altered, or even switched on or off in both XX and XY embryos. This can result from environmental stimuli. “Sex chromosomes”, as a label, is neither scientific nor accurate as a term for either or both the X and Y chromosomes.

Thus, referring to either the XX or XY karyotype of an individual as the person’s “genetic sex” is also a misnomer since most genes involved in sex determination are on the autosomes and not the so called “sex chromosomes”. Furthermore, to refer to an XY person as a genetic male or genetically male, or an XX individual as a genetic female or genetically female, is errant and is a rare example of how scientific terminology is misused when compared to other relevant examples. For instance, sex is a phenotype, just as hair color, height, and eye color. Just as it is unscientific to refer to someone as a “genetic tall person” or a “genetically blonde haired person”, it is not scientific to use expressions such as “genetic male”, “genetically female”, or “chromosomally a male” to define an individual’s sex. When speaking about traits which affect individuals who are XY to a far greater degree than those who are XX, it is also unscientific to refer to them as “male limited”. They may be XY limited, but not “male limited”.

Because most sex determining genes are on autosomes, most intersexed individuals have a typical XX or XY karyotype. Thus, to divide intersexed individuals into categories such as XX intersex (now 46, XX DSD) or XY intersex (now 46, XY DSD) is counterproductive and problematic (4). An XX male with unambiguous testes and only male sex organs has virtually nothing in common with an XX female who lacks a uterus. Yet, both would be classified as having a 46, XX DSD. Likewise, an XY female with a uterus, and no male sex organs and who can deliver a baby, has virtually nothing in common with an XY male born with cloacal bladder exstrophy. Yet, again, both of them would be classified as having a 46, XY DSD. To further compound the problem, if someone who has both XX and XY chromosomes (known as XX/XY chimerism or XX/XY mosaicism), were also what was formerly called a "true hermaprhodite" (a case of both ovarian and testicular tissue co-existing in the same individual), that same person would now not only have an “ovotesticular DSD” but also a “chromosomal DSD”. Yet again, this intersexed person would have virtually nothing in common with an anatomically typical and even fertile male or female, who may also be XX/XY (5, 6). Yet this anatomically typical and fertile male or female would now have a “chromosomal DSD”. It doesn’t stop there. There are numerous examples of how this bad science leads to erroneous categorization. For instance, someone can be XY in the blood karyotype, yet be XX in the skin and ovaries and be a fertile female, simply due to blood chimerism caused by a twin fetus brother (6). This person would ostensibly have a “chromosome DSD”, would be misdiagnosed in amniocentesis, or chromosome screening, and although DSD is supposed to represent congenital conditions, this would be an “acquired DSD”, which likewise would be misdiagnosed even in later life.

Forensic science has now realized the error in using “male DNA” or “male genetics” at crime scenes (7). Legal systems are now realizing the same for trying to find “correct” sex for marriage (when actually they would promote same sex marriage by using “sex chromosomes” as decisive, since an XY female who can give birth could be viewed as the opposite sex of an XX female who could also give birth) by using outdated and incorrect “science”. That an XX true hermaphrodite was declared female due to karyotype (8) has been criticized (9) and not followed in subsequent legal practice. Even sports medicine is realizing that “sex chromosomes” or indeed any given “sex gene” is inadequate for “determining” the sex of an athlete (10).

It is time to dismiss mythology as a substitute for scientific knowledge and evidence, and if this requires social and political acquiescence, then so must it be.

REFERENCES

1. Ronfoni L, Bianchi ME Molecular mechanisms in male determination. Cell Mol Life Sci, 2004, 61:1907-1925.
2. Selvaraj K et al. Successful pregnancy in a patient with a 46, XY Karyotype. Fertil Steril, 2002, 78:419-420.
3. Yu, Q et al. The role of sexual related Y gene detection in the diagnosis of patients with gonadal dysgenesis. Chinese Medical J (Eng), 2001, 114:128-131.
4. Hughes, IA et al. Consensus statement on management of intersex disorders. J Ped Urol, 2006, 3:148-162.
5. Schoenle, E, et al. 46,XX/46,XY chimerism in a phenotypically normal man. Hum Genet, 1983, 64:86-89.
6. Sudik, R et al. Chimerism in a fertile woman with 46, XY karyotype and female phenotype. Hum Reprod, 2001, 16:56-58.
7. Von Wumb-Schwark, N et al. What do the X and Y chromosomes tell us about sex and gender in forensic case analysis? J Forensic Leg Med, 2007, 14:27-30.
8. In the Marriage of C and D (falsely called C) (1979) 35 FLR 340.
9. Finley, HA Sexual Identity and the Law of Nullity (1980) 54 ALJ 115.
10. Dickinson, BD et al. Gender verification of female Olympic athletes. Med Sci Sports Exercise, 2002, 34:1539-1542.

Sunday, March 16, 2008

DSD (Disorders of sex development): a sexist, classist ideology based on eugenics

by Curtis E. Hinkle

1) What is sexism?
2) What is eugenics?
3) Who controls the definitions?
4) Who is fit to be born?
5) Is our sex a disorder?

1) What is sexism?

Sexism can be considered from different perspectives, both intricately related one to the other, one based on discrimination itself and the other on the division of all humans into legal sex categories which is the fundamental tool used to perpetuate and justify the discrimination.

Discrimination against people which is based on their sex assignment as male or female, instead of their individual merits, is sexist. This discrimination is so prevalent in our societies that it appears natural because we assume that the underlying binary division of all people into male and female is also natural, but it is not. Intersex people prove that it is not and it can be argued rather convincingly that the erasure of intersex as a natural sex variation is a result of the basic sexism which is considered normal in our society. Unfortunately, sexism is "normal" because there are medical and legal norms which justify this sexism. However, the fact that it is "normal" does not mean it is natural.

The most basic form of sexism is the biological essentialism (1) which is used to divide all humanity into just two legal categories - male and female with all deviations defined as pathological and in need of medical intervention to "correct" their sex. There would be no reason to justify this division of all humanity legally and medically into just two categories (2) if we felt there were no fundamental differences between these two categories and there would be no need to pathologize all intersex people as disorders of sex development if this unnatural division of all humanity as male or female were not politically motivated. (3)

2) What is eugenics?
"Eugenics is the study of or belief in the possibility of improving the qualities of the human species or a human population, esp. by such means as discouraging reproduction by persons having genetic defects or presumed to have inheritable undesirable traits (negative eugenics) or encouraging reproduction by persons presumed to have inheritable desirable traits (positive eugenics)."
Based on the Random House Unabridged Dictionary, (c) Random House, Inc. 2006.

Eugenics has a very tragic, racist, classist history. (4) The nature of eugenics makes it a political ideology based on definitions of people which divide humanity into those who are fit and those who are unfit. The basic problem is that those who control the definitions are those who have political supremacy over disenfranchised populations. Denying the racist, sexist and classist history of eugenics is dangerous if one honestly wants to understand the political motivations behind eugenic movements.

In the 20th Century, abortion has been introduced as a tool for eugenic movements. This is very problematic because the conflation of women's rights with eugenics often obscures the underlying racism, sexism and classism involved in the justification of abortion as a eugenic tool. Both sides of this debate overlook the serious dangers and inequalities of women as a class. The pro-choice debate does not emphasize the lack of most women in the world to make a real choice because they are deprived of that power even when abortion is provided and this can often lead to the elimination of female fetuses. The pro-life debate fails to recognize the need for women to control their own bodies and have the right over reproductive decisions concerning their bodies.

Instead of dealing with the serious oppression of people based on race, sex and class, upper middle-class pro-choice models of abortion as the model for feminism assumes that women who are lacking almost all control of their reproductive rights can benefit from such a model. What can often happen is the choice to eliminate females and all deviations from male and female with only male births being favored. (5)

3) Who controls the definitions?

Those in charge of the definitions which determine who are male and female and whose sex is a genetic defect is a group of predominantly, Euro-centric male medical experts: the Lawson Wilkins Pediatrics Endocrine Society along with Eric Vilain and Alice Dreger both associated with the Intersex Society of North America (ISNA). This is the group which is responsible for the Chicago Consensus Statement on Management of Intersex Disorders which redefined intersex as a genetic defect and recommended the new "disorder" terminology with "intersex" being replaced by "disorders of sex development". (6)

This same group published the following consensus statement on CAH which recommends surgery on intersex infants between 2 and 6 months of age:

Consensus Statement on 21-Hydroxylase Deficiency from The Lawson Wilkins Pediatric Endocrine Society and The European Society for Paediatric Endocrinology (Joint LWPES/ESPE CAH Working Group)

http://jcem.endojournals.org/cgi/content/full/87/9/4048

4) Who is fit to be born?

Those who are closest to the ones who control the definitions. Let's be honest and stop trying to justify racism, sexism and this abuse of power over us just because those in charge of the definitions are powerful and have great influence around the world. We are not fit to be born because we do not look like them; we do not act like them and we are a threat to their two-sex system which keeps them in a privileged position. They are "fit" simply because they control the definitions of who is fit.

5) Is our sex, that is intersex, a disorder?

We in OII firmly reject the idea that our sex is a disorder and we therefore reject the pathological definition of our sex as a "disorder of sex development" or DSD. The real danger and disorders are the racism and sexism which are developing eugenic ideologies and technologies to deal with what are social problems. Instead of empowering and valuing sex variations, the solution is to eliminate us.

Open discussions about the abuse of power by those who control the definitions is one important way to confront the real problem - eugenics, Euro-centric racism and male patriarchal models of power which are at risk of collapse if the current binary male/female dichotomies are not firmly held as sacrosanct.

We in OII do not accept the current male/female binary categories imposed on all people in most countries as sacrosanct and hope that others will help us confront the political agenda of those who would eliminate us.

Footnotes:

(1) "Biological Essentialism: Biological essentialism refers to the idea that men and women are intrinsically different due to some internal essence. Biological essentialists argue that men and women are distinct from one another and that they are opposites. They claim that gender differences aren’t really differences in gender but that they reflect a biologically based difference that is consistent across cultures. Furthermore, biological essentialists stipulate that there is no variation in the expression of biologically essential characteristics."
http://www.geocities.com/CollegePark/Bookstore/2603/NEW261Y_Definitions.html
(2) Project 1-0-1 intersex
http://www.101intersex.de/index.php?=SID&sprache=En
(3) RACISM and SEXISM: A COLLECTIVE STRUGGLE: A MINORITY WOMAN'S POINT OF VIEW By Valerie Russell
http://scriptorium.lib.duke.edu/wlm/racesex/
(4) Brief history of eugenics: http://en.wikipedia.org/wiki/Eugenics#History
(5) What Is Gendercide? http://www.gendercide.org/
(6) Alice Dreger and some other women who have great privilege within the two-sex system have played a prominent role in pathologizing sex variations. For more information: click here