The Push to Ban Intersex Medical Intervention.
These decisions are agonizing, personal affairs. Parents find themselves overwhelmed, inundated with a field of new information they never expected to encounter, and tasked with a decision they never expected to make. It would be unconscionable to place the entire burden on the parents, when they do not have the knowledge or training to make fully informed choices. Medically, it is the job of pediatric urologists to care for these children, and they generally do so with the sincerest concern for the infant at the center of all decisions. Few professionals go into such a field without harboring a genuine interest in their patients' well-being, and even fewer could steel their hearts against the anguish that accompanies a new parent having to confront such a decision.
In the past, there was relatively little information for pediatric urologists to draw from. Such conditions are relatively rare, meaning that physicians were often confronted with situations they had never encountered before and for which they could find little to no literature. In addition, there was meager support from other medical fields, meaning that urologists had to consider issues, such as mental health, without the aid of psychologists or psychiatrists. Furthermore, their considerations were often constrained by the social prejudices and limited availability of surgical options. Unfortunately, despite their and the infant parents' best intentions, there is little to no doubt that some surgeries and decisions had disastrous consequences.
Today, the situation has improved dramatically. Parents and pediatric urologists are often supported through a multiprofessional team of experts, including endocrinologists, therapists, psychiatrists, psychologists, and social workers. As our understanding of neuroscience and sexuality evolves, these medical professionals have been able to create a more holistic understanding of intersexuality. This involves considering not only the physical, mental, and emotional implications of surgery, but the implications of not having surgery as well.
Studies have been undertaken to determine what happens to intersex children who either do or do not undergo surgery. Professionals have gained a much deeper understanding of the implications of surgery and the relationship between sexual maturation and the various intersex conditions (Societies for Pediatric Urology et al., 2017). The result has been a growing literature and a consensus that there are no blanket solutions.
In this respect, it would be misleading to characterize pediatric urologists, as some have done, as being inherently pro-surgery. There are conditions where surgery is almost certainly the wrong solution, just as there are conditions for which results of surgery have statistically proven to be overwhelmingly positive, such as if needed to save the life of the infant due to functional issues.
Congenital Adrenal Hyperplasia
A paradigmatic example concerns a condition known as congenital adrenal hyperplasia (CAH), a potentially life-threatening endocrine disorder that is also the most commonly diagnosed cause of atypical genitalia. This condition consists of several autosomal recessive diseases, most of which involve either excessive or deficient production of sex steroids, which can alter the development of primary or secondary sex characteristics. Of the many possible symptoms, one of the most notable results is ambiguous or underdeveloped genitalia. Most children who mature with CAH never question their gender, and the overwhelming majority of surgery patients have approved of their surgeries (Fagerholm et al., 2010).
The medical community's treatment of CAH has been a resounding success. As many CAH-affected families have described it, the children overwhelmingly identify with their chromosomal gender, to the point where many with CAH even repudiate the label of "intersex." Furthermore, they contend that such surgeries are not gender reassignment surgeries. Rather, the procedures are aimed at restoring the functionality of the existing anatomy to allow for proper voiding and reproduction. In fact, nearly 90% of patients believe that feminizing genitoplasty procedures should be performed within the first year of life (Binet, Hubert Lardy, Francois-Fiquet, & Poli-Merol, 2016)--a powerful affirmation of the medical community's current practice.
Unfortunately, intersexuality has become highly politicized over the last few years. What should be treated as a medical concern and a deeply personal and private decision has become a talking point and rallying cry for activists who often lack a nuanced understanding of the issue, and generally, have an agenda beyond acting in the interests of patients. Much of the recent political discussions in our culture have centered around evolving understandings of the nuances of sex and gender, but these activists tend to compress a wide spectrum of conditions under singular labels, with singular solutions.
The simple fact is, there are no singular solutions. What has gone under the label of "intersex" encompasses such a wide variety of conditions that it is simply impossible for any principle, law, or procedure to adequately cover everything. Depending upon one's medical condition, studies have shown highly divergent responses to treatment and have come to increasingly nuanced conclusions. To speak of this wide spectrum of people as if they are a coherent group with identical interests and functional issue is to do a great disservice to the diversity and pluralism of these individuals.
Focus on California
Last year, a resolution was passed in the California state legislature that declared non-consensual intersex medical interventions to be an abuse of human rights. Support for the bill was galvanized by political language decrying homophobia, patriarchal social orders, and heteronormative medical paradigms. Surgeries were characterized as forms of torture, violence, and genital mutilation.
Such language should have no place within the confines of this discourse. To characterize the surgeries as torture, violence, or genital mutilation is to diminish the cautiousness with which surgeons approach these procedures, insult the moral integrity of the surgeons, and cheapen the relief of those who have benefited from the surgeries. The sheer gravity of the issue behooves us all to treat this discussion with the language it deserves, as well as to acknowledge the difference that exist between all varied identifications common in discussion of sexuality in our current society.
In a state that has a history of being at the forefront of social progress, the intentions of well-meaning individuals have been coopted by a political agenda that has exploited a vulnerable class. Patients who qualify as "intersex" are a small minority of the population (about 1 in 1,500 to 1 in 2,000) (Intersex Society of North America, n.d.), with the variety of individuals who have one of the many conditions constituting even smaller classes of minorities. That reconstructive surgeries have proven to be highly successful in many cases simply does not fit the narrative of social progress; thus, these individuals have been silenced in the political arena.
For many in these intersex communities, it has been heartbreaking to see their medical conditions politicized. Patients with CAH generally regard their condition not as a political issue, but as a life-threatening medical one. For women with CAH, it is a matter of their ability to properly menstruate, a matter of their ability to safely have sex, and a matter of their ability to have children. It is not an issue to be exploited by a political agenda that gives little voice to those it purports to protect.
Right now, discussions are under way in California to draft a bill that would include an outright ban on any procedure performed in infancy deemed to be medically unnecessary. The consequences of such legislation would be disastrous.
A primary issue is that such legislation would completely ignore the distinctions and gradations between the various conditions labeled under the umbrella term "intersex." There are approximately 30 different conditions presently qualified as "intersex," each distinctly unique, each requiring its own specific treatment and set of considerations. It would be immensely foolish to imagine that such a wide variety of conditions could be singularly treated in any reasonable way, medically or legislatively. Unfortunately, the legislation would include groups almost certain to be negatively impacted.
To give one example, patients with CAH would find themselves subject to the dictates of such legislation despite their own strenuous objections to even being labeled as intersex. The proposed bill would make it illegal to perform genital reconstructive surgeries on babies born with CAH unless medically necessary. In a Finnish study on women who had undergone such surgeries in childhood, none of the women thought it was performed at too young of an age. Proponents of the legislation often speak of the psychological trauma done to infants through such surgeries, yet when questioned on their memories of the operations, most of the women either had positive memories of the experience or no memories of it at all. Of those who had distressing memories, their surgeries were generally performed at older ages after infancy. This research indicates that waiting to operate on patients with CAH only invites the possibility of psychological trauma.
This raises another issue with the legislation: Should this be a state decision? Activists have repeatedly made this an issue of human rights, and in many ways, it is. In cases where studies have shown it is better to wait, it would certainly be an egregious malfeasance to make the decision for the child. However, it would be equally egregious to hand that decision over to government officials and politicians. In cases like CAH, where the medical evidence is overwhelmingly in favor of early surgery, the proposed bill would have a limiting effect on parental choice, to the detriment of the children.
Such legislation would also have an unintended freezing effect. The medical field is constantly evolving. Surgical techniques are rapidly improving, psychological models are being enhanced, and medical professionals are regularly revising their understanding of the intersections between these various fields and how they affect patients. Legislative action would have the effect of locking the current paradigm in place, stymying future developments.
One of the most alarming aspects of the legislation has been the impetus behind it. Legislation on medical issues should be informed primarily by medical professionals and those directly impacted. Yet the movement in California has been driven in large part by people who have neither the medical expertise nor the personal stake to justify their continued outrage. Actual patients with CAH find themselves frustrated at seeing their own condition so poorly misrepresented. Many of them find it insulting to see their treatments referred to as "gen ital mutilations" and "torture," when for them, it was anything but.
In addition, many in the intersex community see a latent homophobia in the recent legislation. The preference for delaying surgery and taking the decision out of the hands of families belies a preference for children to grow up transgendered rather than homosexual. What should, in essence, remain a concern regarding the sex of an individual has become cast as a judgment against their sexuality. What's worse, activists and the legislation they're proposing would allow children to make decisions regarding surgery at their most vulnerable period of development. Research has consistently shown that the majority of children with gender dysphoria outgrow their feelings of dysphoria by puberty, and by their adulthood, identify as homosexual, not transgender. Another study has also detailed the prevailing attitudes on transgenderism, noting that in many ways, being transgender has even come to be seen as more acceptable than being homosexual (Littman, 2018).
Over the last few years, transgender activism has successfully ridden on the coattails of the gay rights movement and their hard-fought victories. Public attitudes toward homosexuality have rapidly changed, and opinions and behaviors that once denigrated and persecuted those in the gay community are now rightfully seen as abhorrent. Many well-meaning individuals have become convinced that the fight for transgender rights is commensurate, and there has been a tendency toward blanket acceptance without nuanced understanding. Unfortunately, this has led to the exploitation of many within the medical intersex community who feel their issues are not being properly articulated, and who feel as if their identity and medical condition have been politicized for the purposes of a movement that does not represent them.
California has historically been one of the most progressive states in our country, and many Californians rightfully see themselves as the vanguards of social progress. However, this legislation is anti-medicine, anti-patient, anti-doctor, anti-child, and anti-choice. There is absolutely nothing moral, righteous, or just about what this legislation would do. I have no doubt that activists in favor of such legislation seek what's in the best interest of the intersex community, but this is not the way to do it.
Binet, A., Hubert Lardy, D.G., Francois-Fiquet, C., & Poli-Merol, M. (2016). Should we question early feminizing genitoplasty for patients with congenital adrenal hyperplasia and XX karyotype? Journal of Pediatric Surgery, 51(3), 465-468.
Fagerholm, R., Santtila, P., Miettinen, P. J., Mattila, A., Rintala, R., & Taskinen, S. (2010). Sexual function and attitudes toward surgery after feminizing genitoplasty. Retrieved from https://fhs.mcmaster.ca/pediatricsurgery/documents/Sexual fcnaftergenitoplasty.pdf
Intersex Society of North America. (n.d.). How common is intersex? Retrieved from http://www.isna.org/faq/frequency
Littman, L. (2018). Rapid-onset gender dysphoria in adolescents and young adults: A study of parental reports. PlosOne. doi:10.1371/journal.pone.0202330
Societies for Pediatric Urology, American Association of Clinical Urologists, American Association of Pediatric Urologists, Pediatric Endocrine Society, Society of Academic Urologists, The Endocrine Society, & The North American Society for Pediatric and Adolescent Gynecology. (2017). Physicians recommend individualized, multi-disciplinary care for children born 'intersex'. Retrieved from http:// spuonline.org/HRW-interACT-physicians-review/
Singh, D. (2012). A follow-up study of boys with gender identity disorder [Master's thesis, University of Toronto]. Retrieved from https://tspace.library.utoronto.ca/bitstream/1807/ 34926/1/Singh_Devita_201211_PhD_Thesis.pdf
Lane Palmer, MD, is President of the Societies for Pediatric Urology, President of Pediatric Urology Associates, and Chief of Pediatric Urology, the Cohen Children's Medical Center of New York, Queens, NY.
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|Title Annotation:||Special Issues in Urology Nursing|
|Date:||May 1, 2019|
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