Regressive treatment for disorders of sex development (DSD) in a world of evolving and infinite gender. Olivia Thompson Radford University December 9, 2012
In the United States and many parts of this world there is an invisible set of beliefs about gender that perpetuates innumerable justifications and stereotypes for what is acceptably male and acceptably female. Blinded by all forms of the media, there is no other choice but to believe that gender is something intrinsic. Stereotypes of the two normative genders are in everything that is around, because elaborately and over many generations, binary of gender has been formulating along with an extensive list of ideals that should progress every person’s actions and rationales. Unfortunately what is very much unnoticed by society, controls almost every aspect of their daily lives. When a child is born, all of their traits are assessed beginning with the infant’s gender. In certain cases when ambiguous genitalia are present, or if there are symptoms of congenital adrenal hyperplasia, Kleinfelter’s syndrome, or a number of other ‘abnormalities’ with that often do not present symptoms, the sex of the baby is chosen and determined by the doctor as quickly as possible. Gender is a concept that was created but is not even really relevant in a child’s life until early puberty when other hormonal shifts become present. How can a doctor decide what gender an infant is, and try to surgically and hormonally alter that infant so as to make it fit into the tiny box that is the duality of gender? The current medical model of management of DSD infants is unethical malpractice because it creates a barrier on the growth and development of gender diverse people and puts parameters on their gender identity based on the societal binary of gender, which not only leads to increased future psychological problems in DSD individuals but also is delaying the evolution of human species through formation of new genders. A Brief History and Defining of DSD/Intersex and Gender Identity ‘Developmental sex disorders’ [DSD], formerly more commonly referred to as ‘intersex’, is the presence of what is viewed, by current medical classification, as a congenital developmental abnormality of an infant’s internal and/or external genitalia, or chromosomal variation (45, X, 46, XY, 46, XX, 46, XX/46, XY, 47, XXY, or 47, XYY and more), (Souter 2006) and/or complex hormonal patterns caused by the differentiation of gonadal development. During the six to twelve week period of
gestation, genital differentiation occurs as a result of exposures to different levels of various hormones and androgens causing the gonads to typically form into ovaries or testes. Specific genes such as ‘SRY’, which promotes the development of the testes, and ’DAX1’ which is, “necessary for both testicular and ovarian development”, need a “precise gene expression dosage” (Öçal 2011). “Overexpression” of specific genes and androgen hormones changes the development of the reproductive system. The different forms of DSD are the diverse form of genitals and reproductive systems that have thus far been titled, categorized, and differentiated from one another. According to varying quantitative studies, one out of every 3500-4500 infants are born with external genitalia that is impossible to distinguish as either male (typical) or female (typical). Not all patients have completely ambiguous genitalia however, and the remaining patients with diagnosable forms of DSD fall on a wide spectrum with a mixture of either some form of visible variation, internal irregularity, and/or hormonal anomaly as a result of a specific chromosomal, hormonal, and anatomical alliance while in utero. Common examples of these different variations of physiology have been condensed into three groups listed below according to Ocal’s research and the Lawson Wilkins Pediatric Endocrine Society and the European Society for Pediatric Endocrinology consensus group. See Table 1 for further information. The three groups are as followed:”1) Sex chromosome DSDs: (45X Turner, and variants, 47XXY Klinefelter and variants, 45X/46XY mixed gonadal disgenesis (MGD) and chromosomal ovotesticular DSD ‘46XX/46XY chimeric type or mosaic type’), 2) 46 XY DSDs: (disorders of testicular development or disorders in androgen synthesis/action), and 3) 46 XX DSDs: (disorders of ovarian development or fetal androgen excess) “(Öçal 2011) .When a diagnosis is not found in infancy, most underlying deficiencies of DSD will establish noticeable symptoms during adolescence and early puberty, after expected pubertal processes fail to happen in the presence of unexpected tendencies. Accurate quantitative data on intersex beings is understandably hard to obtain. Although
different researchers have tried to get closer to being able to document the increasing number of DSD individuals certain factors stand in the way. In cases where: DSD symptoms do not appear until early puberty, undiagnosed conditions, lack of treatment and medical follow-up, or the fact that there already is not records of each individual born, all these factors create a barrier to finding a true statistic. As it remains though, studies range widely in their claims of intersex population, and findings are anywhere between 1.7% and 0.018% (Sax) of population have DSD. Gender Identity is supposed to be the cohesion that one can feel between all physical characteristics aligning with the individual’s mental ideal of these characteristics. Gender Identity plays a huge role in defining the concept of intersex and what the subsequent medical determinations may be because of the current medical model. Based on the current model that emphasizes the possibility of only male or female gender to be reared, physicians learn preconceived fears for future gender identity confusion and disorders. The DSM-IV describes gender identity disorder as,”a strong and persistent cross-gender identification” (DSM-iv-tr) in stereotypical terms that take into consideration the clothes that someone wishes to wear as well as the noticeable behavioral opposition. And while it says that, “The disturbance is not concurrent with a physical intersex condition” (DSM-iv-tr) Gender Identity disorder is almost inevitable within the intersex community as they are forcibly socialized into one of two genders and were born a gender that is not male or female. The Hamburg studies highlight the dissatisfaction of the DSD patients who have experienced varying levels of medical interventions, with corresponding levels of dissatisfaction and arguably fall under these same criteria for gender identity disorder. Each individual with separate forms of DSD and others that are either undiscovered or haven’t evolved yet will all embrace distinct and complex gender identities. The individuals with DSD that have been treated under the optimum gender model are more likely to experience gender identity confusion in adult life because their bodies have been altered either surgically or hormonally to a physical state that is unconnected from their natural complex gender identity.
The chosen gender of male or female, nurtured into a gender variant human has more empirical evidence of interfering and causing issues in creating a well-adjusted and complete sphere of psychological, social sexual role, and gender identity. Apart from psychological issues that arise often in treated DSD individuals, physical sexual fulfillment is a concern after anatomy altering and deforming surgeries scar sexual function and satisfaction. Other physiological concerns are the possibilities of modification of reproduction utility after hormonal treatments by creating or preventing the patient’s hormonal patterns from ‘masculinizing’ or ‘feminizing’ naturally. The model of optimal gender is based on more anecdotal proof and less empirical evidence created under rigid and classifiable ideas of psychological disorders, such as gender identity disorder. Most of these psychological disorders were created based on unjust social inequalities and cultural perceptions that have subsequently and steadily changed over history. The rights of gender diverse humans are being affected today by these same types of cultural perceptions and these effects can be seen by the research of substantiation of dissatisfaction in quality of life over many planes. The number of known structural and compositional differences of anatomy that have been found greatly outnumbers the two structures and compositions of male and female gender which are trying to be fostered into every human. The ethical examination for the current medical management and ideology of “optimal gender” has consequently ensued. Current Medical Model and Standard Practice The current medical model of “optimal gender-policy” is heavily based on the model established and implemented in 1955 by John Money and others at the John’s Hopkins University. (Brinkmann, 2007). In part because of this medical model which calls for an “optimal gender” to be nurtured and reared into the child (either female or male), and in part because of the language and terminology used in defining structures of development as disorders and abnormalities, DSD resolves for some type of immediate treatment. Money believed it possible to socialize gender even when it
conflicts with what can be called “natural gender”. The American Academy of Pediatrics practices and lays out the guidelines for treating and diagnosing infants with DSD conditions. The medical model constitutes that, “the birth of a child with ambiguous genitalia constitutes a social emergency” (Committee on Genetics, Endocrinology, and Urology 2000). A thorough examination and diagnosis with a treatment plan is expected to be promptly implemented as to relieve the parents and child from, “a number of considerations that have an impact on the infant’s future” (Committee on Genetics, Endocrinology, and Urology 2000).
This treatment involves surgically shaping and hormonally
modeling the innumerable forms of anatomy into two already structured genders of male and female. A number of screenings are performed to choose the gender; primarily based on reproductive abilities. After surgical interventions, and even when no genital reconstructive surgeries have been performed, adolescents many times also need to follow up for hormonal treatments. If gender was placed on a continuum each individual case of DSD would need a completely individual plan or no treatment at all, with exception to any proven and urgent life threatening conditions. All of these interventions are treated with a level of secrecy that is promoted directly from the “optimal gender policy”. .
The level of secrecy imposed upon the parents, in the carefully created atmosphere and with
meticulously trained and chosen words permeates the parent’s emotions. It is not difficult to hide discussion on this topic with developing children as genitals and gender are often linked to human sexuality to begin with. Physicians also encourage expressing a gender-stereotypical and limiting segregated ideology of gender into the child. They explain the importance of nurturing a normalized gender, and how the child needs this so as to not have role confusion. The doctors are projecting an emotional world of distress and confusion onto the parents so as to really make them understand the need for discretion and secrecy, in a completely manipulated gender. The parents are left with a feeling of obligation and implication of their future handling of their child. The doctor will typically describe how once they have chosen a gender it is important to nurture that gender into them. Doctors believe
they are already looking to the future when assessing the gender for the child. They contend to the idea that they are helping to help the parents be able to foster and nurture a gender into their child. ((Committee on Genetics, Endocrinology, and Urology 2000). Because of constantly changing taxonomy and opposing viewpoints that occur on the 1) social, 2) medical, and 3) humanitarian level, it is difficult to compile a list of currently preferred descriptors for DSD. For example, the term ‘intersex’ developed with confusing and conflicting boundaries and connotations on all three levels. ‘Intersex’ has tried to shift further away from associations with gender identity and more towards a medical model of diagnosis of disorder with a treatment and has hence been changed to DSD. Another example of this shifting terminology such as above is ‘true hermaphroditism’ which is now classified as two different forms of ‘Ovotesticular DSD’ with either 46XY, or 46XX karyotype, and the terminology will most likely change again. Because of the damaging connotation of the word ‘disorder’, many who are concerned by this classification appeal to a, “a recent shift toward substituting ‘disorder’ with ‘differences’ or ‘divergence’ to avoid implying a medical fix”(Farjood, 2011). The increasing ethical scrutiny and awareness for the medical process and management of DSD individuals is allowing for new research on the outcome of DSD adults, and how their reared gender and treatment(s) impacted their quality of life. Considering, 1) the level of varying abnormalities and DSD traits, as well as 2) difference in chosen gender, and 3) possible combinations and degree of surgical treatment and/or hormone replacement therapy, the group becomes more difficult to organize and define because each DSD case is complex and individual. Unnecessary Preventative Treatment While it may appear that the actual chemical structuring and ambiguous genitalia found is the disorder, much of the guidelines for DSD management are preventative treatments for the future. The
future through the eyes a physician who operates under the optimal gender model is a future of psychosocial gender based confusion and distress for untreated DSD patients. There is no denying that much of the treatment is actually preventative treatment, as opposed to urgent and necessary treatment. Even though medical journals such as the American Academy of Pediatrics, do make anecdotal claims about the “future”, the treatment still follows the “optimal gender” model of urgency as to prevent problems and future issues with concern to, “falling in love, dating, attraction, ability to develop intimate relationship, sexual functioning, and the opportunity to marry and raise children” (Weisemann et all, 2009). More progressive and patient based research models of proposed DSD management, such as the European Journal of Pediatrics, have begun trying to see the true most beneficial patient treatment. For this to happen though a faster shift toward their model of, “full-consent policy”, will have to occur. (Weisemann ET all, 2009) What Research Has Been Done On Adults with DSD? However as mentioned, there is not much psychological evidence to back up the outcome of neither the treated DSD adults, nor the untreated DSD adults. Research actually shows more evidence towards gender confusion and psychological issues in adulthood in DSD patients who have been treated. The statistical trends show the most displeasure and distress leaning toward those who undergo the most hormone treatments and endured most invasive genital reconstructive surgeries. The ‘Hamburg Follow-Up Study’ is one of the only studies that look to follow up with DSD patients and utilize psychological screening and evaluations on different levels of satisfaction to create actual evidence for the outcomes of treatment with DSD individuals. Thirty-seven adult DSD patients including: congenital adrenal hyperplasia (CAH), complete/partial androgen insensitivity syndrome (CAIS/PAIS), gonadal dysgenesis (GD), and androgen biosynthesis deficiencies 5 alpha reductase deficiency and 17 beta hydroxysteroid deficiency (5αRD/17βHSD) participated in the study in Germany. This study expresses the results of psychological issues and gender dysphoria that is found in heavily treated DSD patients. Many experienced difficult physical issues also, resulting from
previous surgical interventions that later had to be corrected with surgical procedures to enable sexual functioning. This study thoroughly investigates each form of DSD individually. Medical and treatment history is examined, the specific diagnosis, and the karyotyping, are all taken into consideration. The medical history also includes diagnosis and situation during infancy, and at puberty. This information shows what presence and level of DSD was found at birth, and what gender they were reared as at birth. Many times the karyotyping was often in conflict and opposite of typical gender karyotyping match. Of the thirty-seven studied, “all 23 ‘XY-Women’…were gonadectimized and from then on substituted with sex hormones…many also underwent surgical feminization procedures such as clitoris reduction, vaginoplasty, and vaginal dilation” (Brinkmann et al, 2007), all to prevent virilization, to fit into the assignment of being female and escape the supposed future problems. Symptoms at puberty display more processes that conflict with the gender that was often surgically mandated as seen by the thirty-two participants who haven’t, “decided on any of the operations themselves”(Brinkmann et al, 2007). Sexual orientation and current gender identity is also assessed and adds results for comparison between the different cases of intersex and gender identities. After gathering all of the medical data that is available, psychological well-being is measured. The differing groups had varying levels of distress but a general result of the study is that most distress of intersex patients comes directly from the treatment and medical management of their situation under the optimal gender model. (Brinkmann et al, 2007). The Hamburg study describes the patient’s desires for consistent psychological follow up and counseling in adult life. The study also shows the lack of knowledgeable and correct information communicated between doctors and patients. The lack of communication and follow-up is a direct result of the optimal gender policies notion toward secrecy. Other psychological studies on written emotional disclosure are strong indicators of the benefits of communication rather than suppression. Procedures and studies, “pioneered by Pennebaker and Beall (1986)” on written emotional disclosure use two control groups to determine any variance in results (Sloan et all, 2005).
One group repeatedly writes about their most traumatic memory
repeatedly over follow up appointments that span weeks. A second group writes about different stressful memories over the span of weeks. This variance in response results indicates that the more often a patient has admission from stress through discussion of stressful and traumatic events, the greater the health, and mental well-being results are. Psychological inventories such as the “Posttraumatic Stress Diagnostic”, “Beck Depression Inventory-II”, and the “Pennebaker Inventory of Limbic Languidness”, and health tests to measure change in illness over time, indicate that that the group experiencing more written disclosure, “reported significant diminished posttraumatic stress severity…depressive symptom severity…fewer health complaints…[and]fewer days sick”(Sloan et al, 2005). Seeing the effects of written emotional disclosure proposes further evidence for a change in the management of DSD patients. A Forcible End To The Evolution Of Gender? Once an understanding has been developed of the common practices and treatments, as well as the outcomes of what is reality for these DSD individuals, a larger concern seems to unveil itself. What cultural and medical perceptions blend together to remain outdated and persistent, despite obvious ethical mistreatment of the rights of people? Disorders are classified and because of the definition, it creates justification for some sort of treatment. This type of classification of identity is dangerous because it causes role confusion and self-fulfilling prophecies. It is common for people to think they need to adapt to society, because humans adapt to their environment. The natural environment has become interchangeable with society however and this is incorrect. Society creates stereotypes and tries to change the natural individual. This is true with natural gender as well, and the fixed binary of male and female. Over many decades the numbers and variations of diversity in gender are increasing and the classifications of disorders will need to adapt to allow for this. An example of this in more recent decades is the issue of homosexuality which used to be considered a disorder in the DSM –I and DSM –II. In 1973 actual homosexuality as a disorder was removed and changed to ‘ego dystonic homosexuality’, which still created a cultural perception of homosexuality as a mental disorder. It took
until 1986 for an entire removal of homosexuality from the DSM-III. (Herek 2012). Decades later stigma still surrounds issues about gay rights in many cultures which effects the ethical treatment and laws despite its infringement upon their rights. Ethically, it is not right to cure sexual orientation, which has been figured out hence its removal from the DSM. The rights of diverse gendered people are not just limited, but completely unavailable because of a cultural and medical perception of two genders. If one feels like they are the wrong gender whether it be through their intersexuality, or those without DSD whom would be considered transgendered, it is ‘Gender Identity Disorder’ and any way it is spun, because of the medical classification is stuck with a medical model of treatment. Dr. Harvey Fineberg is an ethicist and president of the Institute of Medicine, as well as the former dean of the Harvard School of Public Health. He and others like him work to further the medical innovations and technologies that will allow for a more controlled evolution of species. Fineberg believes that there are three routes that evolution could take. The first possibility of evolution is “natural evolution” which occurs over many generations by allowing for natural adaptation and change to occur. Natural evolution is occurring increasingly with variations of human gender, but the medical technology and treatments actually halt this occurrence because of what Dr. Fineberg describes as the difference between medicine and evolution. Medicine is different than evolution because it actually preserves the current body, and will preserve the current genital forms and ideologies that comprise male and female gender. Medicine brings us to the second possibility of evolution being that, “we will not evolve; we have reached a kind of equipoise. And the reasoning behind that would be, first, we have, through medicine, managed to have preserved a lot of genes that would otherwise be selected out and be removed from the population. And secondly, we as a species have so configured our environment that we have managed to make it adapt to us as well as we adapt to it” (Fineberg 2011).
Because of medicine fixing and preserving the species, the course of evolution has been changed from where it would have naturally gone. The current shift in evolution moves towards
Fineberg’s third route of “neo-evolution”, which uses the medical technologies to their advantages through control and manipulation of human genes to have more desirable traits. Medicine is delaying evolution long enough for new technologies to learn more and modify the human body more to fit into societal appraisals of desirability, gender being a prime example of this. The process of neo-evolution eliminates natural evolution and prevents non-evolution from occurring. (Fineberg 2011). Conclusion Commonly held beliefs hold back ethical rationale for decision making and frequently do not take into consideration the rights of all humans. Instead of moving forward with medical treatment before allowing cultural perceptions to catch up, concepts need to be unlearned. Concepts that have been created need to be seen as less defining and limiting because perhaps the rising numbers of gender diverse people are naturally evolving to allow people to better adapt to their roles and feel less confined by what society has created of the two roles of men and women. If gender did not exist, equality between genders could not be an issue, and segregation could not as readily take place. Imagine a world where, without limiting the structure of gender, sexual orientation would lose all cultural stigmatization because the “opposite sex” would not even exist. Reproduction could not be an argument for relations between any set of gendered people or couple.
‘Women’ would not be
considered as child bearers and reproduction machines because someone who conventionally appears male (I.E having facial hair, and elongated phallic clitoris) may still have a working uterus and able to produce child, acceptably married to his other “male” seeming partner. Not all women are supposed to have children, which is the reason why they cannot. Reproduction would not be the meaning and pressure for all life, and the population would eventually naturally decrease allowing for earth’s natural resources to again be plentiful. Lastly, Patriarchal structures would break down to allow for true human rights to be achieved.
Öçal, G. (2011). Table Received from Current concepts in disorders of sexual development. Journal of clinical research in pediatric endocrinology, 3(3), 105-114. doi:10.4274/jcrpe.v3i3.22
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