Vincent Smith

Without long-term outcome data, the risks of individual procedures cant be quantified, nor can the advantages of waiting versus intervening early. Its also unclear whether patients whove gone public reflect most intersex peoples experiences. Clinicians dont know how much of the reported distress arises from outdated surgical techniques, nor do they know yet whether current procedures will prove any better.

Researchers are attempting to better gauge outcomes and satisfaction rates. A forthcoming European report will describe the opinions of more than one thousand intersex patients and their doctors regarding satisfaction with anatomical and functional results of genital surgery, according to a 2019 review article in theJournal of Pediatric Urology. Institutions are conducting other retrospective and prospective studies, such as a U.S. endeavor at multiple sites, including HMS.

Clinicians also are turning to transgender patients for insight. Teens and adults can provide immediate feedback on medical and surgical procedures and describe broad ranges of desired outcomes, which can then inform intersex care, says surgeon Diamond. The relationship seems fitting, since certain surgical interventions for transgender affirmation were informed by procedures developed for infants with DSDs.

But for many intersex advocates, the wait is too long for the results of such endeavors. Over the past decade, advocacy groups have led a global movement calling for a moratorium on genital and gonadal surgeries without patient consent. International health and human rights organizations, including the United Nations and the World Health Organization, have condemned the procedures, and several countries have restricted them. In February, the European Parliament urged member states to prohibit nonconsensual sex-normalizing surgeries as soon as possible. Some medical societies, consortia, and prominent figures such as a trio of former U.S. surgeons general have echoed the call. Several states, such as California, have considered bans.

This sea change has evoked an array of reactions, even among patients. People with CAH in particular say that an outright ban will do more harm than good by depriving families of the option to choose surgery. Appending an objection to a 2019 consensus paper by German academics that supported a ban, one CAH group said the majority of those with CAH who identify as female are satisfied with the results of their feminizing surgery and glad to have completed it in infancy.

The idea that the bodily autonomy of intersex children supersedes parents traditional roles as health care proxies remains a point of contention. National medical ethics councils in Finland, Germany, Sweden, and Switzerland say parents cannot authorize medically unnecessary surgery on genitals or gonads; the 2016 Global DSD Update says they can. Though the United States has not ruled on DSDs, its law and culture generally side with parents right to choose, say Garland and Diamond, and many clinicians continue to defer to them on intersex care.

When we discuss the pros and cons of surgery with the family and they say, We understand the different ways to go and this is what we think is best for our child, I accept that that is a responsible way to manage the child, says Diamond.

Some clinicians fear losing the ability to use their medical expertise to guide families and make decisions based on individual cases. It is not logical to impose mandatory restrictions on surgery in an area as complicated as this, reads a 2017 joint statement from seven U.S. urology and endocrinology societies.

Rosario served as chair of the medical advisory board for the Intersex Society of North America from 2002 to 2006 before he joined the UCLA DSD clinic. Initially against infant genital-normalizing surgery, he found that my opinion softened with actual clinical experience, he says.

Arguments roil about where gender-normalizing surgery falls along the spectrum of acts performed on infant genitalia. All fifty U.S. states condemn female genital mutilation, some advocates point out, so why should intersex surgery be considered differently? Others make comparisons to male circumcision, yet that practice also has been questioned. Professional societies are increasingly supporting interventions for transgender patients, so why deny the choice to those with DSDs, people ask?

While individual clinicians may support restricting infant genital-normalizing surgery, Garland wonders whether the threat of malpractice litigation explains why the U.S. medical profession tends to emphasize following the standard of care rather than trying nonintervention. He adds that in countries where the law requires scientific evidence and careful testing to establish the safety and efficacy of medical interventions, its been determined that these surgeries clearly dont meet that standard.

Pressure to change may come from peers, such as the Massachusetts Medical Society, which is debating a recommendation to delay surgeries on infants with DSDs that are of a non-emergent status until the individual has the capacity to participate in the decision. Doctors listen to other doctors, points out Smith, who serves on the LGBTQ committee that submitted the proposal.

Lawsuits also could influence U.S. medical practice. In a case that settled out of court in 2017, parents sued two South Carolina hospitals and a social services department for having performed feminizing surgery on a child they later adopted who grew up to identify as male.

Should DSD care shift, we will need a new way of thinking about how to determine when a child is able to consent, says Garland.

Those who worry about the lack of comparative data between early, delayed, and no intervention may take note as more nations and institutions restrict surgery on minors.

We may have our control group developing in Europe, says Diamond.

As more practitioners view forgoing surgery as an option, they turn to more flexible alternatives meant to support patients gender expression, such as hormone treatments. Surgeons also consider middle-ground procedures that preserve gender options as children grow.

In a 2018 case review in theJournal of Pediatric Urology, Diamond and colleagues described three infants with genetic mosaicism and complex urogenital and gonadal features whose parents all opted, among other procedures, to create vaginas but preserve the phalluses while they waited for their children to develop a gender. Two families were tentatively raising their children female; the other, gender neutral.

I wouldnt have thought that way at all ten years ago, says Diamond, who estimates he sees one hundred DSD patients a year in the Behavioral Health, Endocrinology, Urology (BE-U) program at Boston Childrens. My frame of mind would have been that the surgical options were more of a binary choice.

To those who believe that refraining from intervention does the least harm, Diamond says, You do your best, and you do it with a lot of humility because you know that no matter what you do, as much data as you have, you may be wrong.

Clinicians continue to learn how to avoid inadvertently making things worse for people with DSDs. Research studies and patient advocacy reports have documented the long-term psychological harm stemming from health care experiences such as repeated genital examinations and photography, depersonalization, and demeaning language.

Thats part of why psychologists and social workers have become essential members of DSD care teams over the past 20 years, although experts agree that psychosocial care still isnt available to enough families.

Surgeons and other specialists focus on their areas, particularly on the genitals, and they dont pay as much attention to the rest of the person, says Rosario. My job is to ask, how are you doing in school, and how are you doing with friends?

Although there is variation across conditions, initial research suggests that people with DSDs are more prone than the general population to mental health problems, including depression, anxiety, suicidal ideation, post-traumatic stress disorder, and trouble with intimacy. Such disparities may arise from treatment, culture, or the biology of the DSDs themselves.

Other studies assess the frequency, severity, and nature of parental distress when children receive DSD diagnoses. Researchers at HMS and elsewhere have found that unexpected anatomical variations, the possibility of stigma, and lack of clarity about the childs cancer risk, fertility, and future gender identity can cause significant anguish. Yet they also have found that caregivers of intersex children are no more depressed and, in fact, are less anxious than the general population.

Still more questions center on what should be done if the bulk of distress over DSDs arises from societal rather than medical issues.

In an era of gender-reveal parties and bathroom access controversies, having a perfectly happy baby with DSD can be like a crisis for families, says Smith. If there are no accompanying medical issues, then it becomes an entirely social-driven crisis.

Clinicians and parents often cite the desire to protect children from social harm when they opt for gender-normalizing procedures. Why, critics ask, in a culture built around binary sex, is the standard solution to alter bodies that are nonbinary rather than broaden societal conceptions of sex and gender?

Its really fraught when a concerned parent or physician thinks that a child who is intersex, and maybe doesnt present in a typical manner, is therefore going to have a harder time in the world, says Potter. That might be true, it might not be true, but in any event, trying to fix it so that they look like people with binary bodies may make a big mess of things.

Maybe we should be trying to help parents, and by extension the people surrounding the parentsthe extended family, the school system, all of these placesbecome more knowledgeable that theres a spectrum of sex presentation, she adds. Instead of conforming a child to something, transform the world in which they live. Then life may not be so hard.

Thats where law can also play a significant role, stopping discrimination and encouraging increased support for parents and children, says Garland.

While Garland, Potter, and others envision a more DSD-friendly future, they acknowledge that the systemic changes required will take time and effort. Meanwhile, others point out, clinicians, patients, and families must live in todays cultural contexts.

Discomfort with atypical sex characteristics is very much a societal problem, but we are caring for human beings who are brought up in our society to think in certain ways, says Diamond. As physicians and as a society, weve evolved a great deal, but were not at the point, I think, where we can routinely be comfortable with ambiguity. Some families can take that leap, but they are so uncommon.

As our culture progresses, that balance may shift. The sharing of peoples preferred pronouns, encompassing a spectrum of identities beyond he/his and she/hers, is becoming more common. People with transgender, gender nonconforming, nonbinary, and intersex identities are increasingly out and proud.

Ive been very surprised and pleased to see how much has changed in the LGBT arena in the past twenty years, says Garland. Its dramatic worldwide. Acceptance has increased of people with different sexualities and genders.

If trends continue, then in another generation or two, the agitation around DSDs may calm. Doctors may deliver healthy intersex babies and simply say: Congratulations.

Stephanie Dutchen is a science writer in the HMS Office of Communications and External Relations.

Image: Cici Arness-Wamuzky (top); John Soares (Smith and Diamond); John Davis (Rosario)

(Reprinted with permission from the Harvard Gazette.)

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Don't Judge, Wait, and Know the Science: InterSex,The Body and The Self - India New England

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