Saturday, July 28, 2012

Images and Musings Available on Tumblr

Sometimes I run across images related to intersex matters that make me want to applaud, or to go hide under my bed.  I've decided to start sharing some of these pictures and my thoughts on them on Tumblr, so if that sort of thing interests you, feel free to visit The Intersex Roadshow Reports.

Sunday, May 6, 2012

Trans and Intersex Children: Forced Sex Changes, Chemical Castration, and Self-Determination

Children’s lives lie at the center of social struggles over trans gender and intersex issues. If you talk with trans and intersex adults about the pain they’ve faced, the same issue comes up over and over again, from mirror-image perspectives: that of medical interventions into the sexed body of the child. Intersex and trans adults are often despairing over not having had a say as children over what their sexes should be, and how doctors should intervene. Meanwhile, transphobes and the mainstream backers of intersex “corrective” surgery also focus on medical intervention into children’s bodies. They frame interventions into the sexual characteristics of intersex children as heroic and interventions into the bodies of trans children as horrific.

The terms and claims that get tossed around in these debates are very dramatic. Mutilation. Suicide. Chemical castration. Forced sex changes.

We need to understand what’s going on here, because it’s the central ethical issue around which debates about intersex and trans bodies swirl. The issue here is the question of self-determination, of autonomy. Bodily autonomy is the shared rallying cry of trans and intersex activists, though we might employ it in opposite ways. Refusing it to us is framed as somehow in our best interests by our opponents.

In this post we will look at how four groups frame the issue: intersex people, trans people, the mainstream medical professionals who treat intersex people, and opponents of trans rights.

If you talk to people who were visibly sexvariant at birth, you hear a lot of pain and anger and regret about how their bodies were altered. This is crystallized in the phrase of intersex genital mutilation, or IGM. As a result of infant genital surgery, many intersex people suffer from absent or reduced sexual sensation—something mainstream Western medicine presents as unethical female genital mutilation (FGM) when similar surgeries are performed on girls in other societies. There are further sources of pain: as a result of “corrective” surgeries, intersex people can suffer a wide range of unhappy results, such as loss of potential fertility, lifelong problems with bladder infections, and/or growing up not to identify with the binary sex to which they were assigned. It is extremely painful to identify as female and to know one was born with a vagina that doctors removed with your parents’ consent, or to identify as male and to know one’s penis was amputated. Imagine if someone performed a forced change on you--would you not feel profoundly violated?

So the intersex perspective is that no one should medically intervene in a person’s body without that person’s full informed consent. Bodily autonomy is a fundamental right. Nobody except you can know how you will feel about your bodily form, whether you might want it medically altered, what risks of side-effects you’d consider acceptable. Routine “corrective” surgery performed on intersex infants is thus a great moral wrong.

When you speak with trans people, childhood medical intervention again comes up with an air of great regret, but now the regret is that one was not permitted to access it. Almost every person I’ve ever spoken with who wants to gender transition medically, whether they’re 18 or 75, has expressed the same fear to me: “I’m afraid I’m too old!” For a while this mystified me (how is 22 “old”?), until I realized what they meant was, “I’m post-pubertal.” For many trans people, childhood was awkward but tolerable, as children’s bodies are quite androgynous. Puberty, however, was an appalling experience. Secondary sexual characteristics distorted the body—humiliating breasts or facial hair sprouting, hips or shoulders broadening in ways no later hormone treatments could ever undo. Many trans people live with lifelong despair over how so much maltreatment and dysphoria could have been avoided if they could just have been permitted to avoid that undesired puberty.

So for trans activists, advocating for trans children so that they might avoid this tragedy is vitally important. The child’s autonomy is central, as it is for intersex advocates, but here the issue is getting access to medical treatment in the form of hormone suppressants, rather than fighting medical intervention. What trans activists seek is the right of children to ask for puberty-postponing drugs, to give the children’s families and therapists time to confirm that the children truly identify as trans, and fully understand what a medical transition involves. Then the individual can medically transition to have a body that looks much more similar to that of a cis person than can someone who has developed an unwanted set of secondary sex characteristics.

So for trans and intersex people, children’s autonomy is paramount when it comes to medical interventions into the sexed body. No child should have their sex (e.g. genitals, hormones, reproductive organs) medically altered until they are old enough to fully understand what is involved and actively ask for such intervention. Conversely, once a child is old enough to fully understand what is involved in medical interventions into the sexed body, and requests such intervention, then it should be performed—whether the child is born intersex or not.

This is not yet mainstream medical practice, however. Today, one in every 150 infants faces medical intervention into the sexed body to which they cannot object or consent. Doctors routinely perform such “corrective procedures” on babies with genital “defects” and “malformations.” Meanwhile, few trans-identified children are supported in their identities by families and medical practitioners—and great controversy and resistance swirls around them when it does happen.

So let’s look at the arguments made by mainstream medicine and transphobic activists. How do they counter the cry for autonomy, given that self-determination and freedom are such central ideals in Western societies? What we’ll see is that they employ two opposing claims based in medical ethics: the duty to save a life, and the duty to first do no harm. If we want to protect the rights of trans and intersex children, we have to understand these arguments and be able to counter them.

When intersex advocates try to fight the framing of intersex children’s bodies as “defective” and somehow in need of surgical “correction,” mainstream medicine responds with a claim of medical necessity. In some very rare cases, particular intersex conditions can be associated with actual functional problems such as an imperforate anus, clearly a serious medical problem that necessitates surgery. But the vast majority of medical interventions into intersexed bodies take place without any such functional, physical problem exsting. They are responses to a social issue (discomfort with sex variance) rather than a physical one. What doctors do, however, is reframe social issues into medical ones. “If we don’t do this surgery, this child will be mocked and humiliated—“he” won’t be able to stand to pee, “she” won’t be able to have “normal sex,” “it” will never be able to marry. The child will be a social pariah and thus be at risk for suicide.”

Through this line of argument, altering the body of the sexvariant infant is cast as a noble act that doctors perform out of their duty to save lives. To counter this, what we need to do is point out that actual studies of intersex adults show that while we do have a heightened risk of depression and suicide, these are caused by unhappiness with our medical treatment rather than prevented by it. Loss of sexual sensation, feelings of having been humiliated by doctors, pain from years of “repair” surgery after “repair” surgery, and for those who do not identify with the binary sex to which we were assigned, the vast sense of betrayal that those who were supposed to care for us subjected us to a forced sex change—these are what lead to an increased risk of suicide. What would really help is would be for doctors to follow the precept of “first do no harm,” to perform no procedures upon us without our full informed consent, and meanwhile, to provide intersex children and their families with social support.

Invocations of “primum non nocere,” first do no harm, and of despicable medical impositions on the lives of innocents are also raised by anti-trans advocates. Transphobic activists generally frame all medical transition interventions as mutilations, and this rhetoric rises to fever pitch when the issue of trans children arises. Recently, anti-trans rhetoric has framed the medical provision of puberty-postponing drugs as “chemical castration” (e.g. in this blog post).

“Chemical castration” is an odd concept. First off, if you read any medical article on the topic, you will find it starting by pointing out that the term is a misnomer, as none of the medications used in “chemical castration” destroy the gonads. The term is nevertheless employed due its specific history as a treatment being given by court order to “sexual deviants” to suppress their ability to have sex, where some prior courts had employed actual surgical castration. Today, some jurisdictions use “chemical castration” in cases of pedophilia, but it the past it was a treatment imposed on men convicted of sodomy—that is, to gay men in an era in which gay male sex was criminalized. Transphobic activists use the term “chemical castration” to evoke an aura of adult sexual deviance, in a manner calculated to frame doctors who provide puberty-suppressant drugs as sexually abusing children.

There is a curious twist in this matter of “chemical castration,” in that universally when court-ordered in the past, and often still today, it did not consist of testosterone suppression drugs as you would expect. Instead, injections of estrogen and/or progesterone were (and are) given. In essence, it caused a forced sex change. Thus, for example, when codebreaking British war hero Alan Turing was convicted of homosexuality in 1952 and sentenced to “chemical castration,” he found the unwanted sex changes in his body so horrifying and humiliating that he committed suicide two years into “treatment.”

In the case of trans-identified kids today, the use of the term “chemical castration” is thus a double misnomer. Firstly, no child is castrated—instead, puberty is simply postponed so that if the child, family, and therapist all agree later that a medical transition is appropriate, unwanted secondary sexual characteristics will not have developed. Plenty of adolescents are “late bloomers” by nature; in fact, puberty today occurs many years earlier than it did through most of human history, when human diets lacked sufficient fats and nutrients to support early puberties. So postponing puberty carries no significant dangers. Further, the point of hormone suppression is not to cause a sex change, in contrast to court-ordered “chemical castration treatments.” The point is merely to buy time to ensure that the trans child in question fully understands zir gender identity and the implications of medical transition.

So: we’ve seen a lot of charged language, of claims and counterclaims regarding mutilation versus vital treatment, cruel withholding of medical assistance versus the imposition of sex changes on unconsenting children. How should trans and intersex advocates respond?

What I would do is to point out that strange and conflicting ideas about children’s autonomy and free will are presented by our opponents. When specialists in intersex “corrective” treatments speak to parents or write in medical journals, they urge that genital surgery be performed in infancy, before age two and a half if at all possible. They claim that this way the child will not remember the treatment and will thus adjust well to the altered genitals and/or sex status. (As if medical monitoring and intervention did not often extend throughout the child’s life, and the procedures left no scars and caused no loss of sensation, so the child would “never notice.”) The age of two and a half came out of now largely-discredited ideas of a milestone of “gender constancy” occurring then, based upon notions of the developing brain that directly relate to autonomy. Before age 2.5, it was basically argued, the baby is irrational and lacks agency, and thus thinks magically about bodily sex, including accepting the “crazy” idea that the sex of the body can change. So, in urging very early intervention into intersex bodies today, conventional medicine is urging the total avoidance of the child’s rational thought and agency.

When it comes to treating trans children, on the other hand, instead of rushing things, all sorts of actors want to draw them out. Most doctors and clinics only provide transition services to legal adults. Those few who treat trans children are extremely cautious about providing any medical interventions other than the postponing of puberty.

Both of these approaches deny children autonomy over their bodies and their lives.

What we must urge is that society consistently respect the rights of children. No children should ever be subjected to sexual surgery without their consent. No children should be forced to have cosmetic surgery. But as children mature, they become able to consent to medical treatment that they do actively desire.

How old is “old enough” to agree to medical interventions into the sexed body? That answer depends on the given child—but 2.5 is certainly too young, and 18 is in most cases too old. What I suggest is that when addressing a medical practitioner urging genital surgery on an intersex infant, that we ask, “Would you perform a sex change on a child of this age who was not intersex?” Conversely, when facing transphobic activists saying that no one who is not a legal adult can be old enough to consent to medical transition services, we should ask if our opponent would say the same if the child were intersex. For example, a child with congenital adrenal hyperplasia may be born with a penis externally, and a uterus and ovaries internally. At around age 12 or 13, if there has been no medical intervention, that child can begin to menstruate through the penis, develop breasts, etc. Would the opponent argue that the child could not be old enough to say that he identifies as male and wants to take testosterone (or that she identifies as female and has decided that she wishes to have surgery to feminize her genitalia)? Would the opponent argue an intersex pubescent child should not at least be able to take puberty-postponing medications to avoid unwanted penile menstruation if they and their family and support professionals were still unsure whether to commit to any more permanent intervention?

What we must ask is that society treat intersex and trans-identified children consistently. We all raise our children to learn to make good decisions, so that they can lead good lives. We must nurture children’s autonomy as they grow, understanding that there are some decisions only they can make for themselves. To force a person to live in a sex with which they do not identify is cruelty; to impose unwanted bodily alterations unconscionable. Wishing happiness for our children, we must nurture and then defer to their right to self-determination over interventions into the sexed body.

Tuesday, March 13, 2012

How Common is Intersex Status?

If you poke around the internet trying to find out how common it is for a person to be intersex, you may well wind up frustrated that nobody seems to have a precise figure to give you. You'll probably encounter some commonly-cited odds: 1 in 2000, or 1 in 2500. People have passed these figures around for a number of years, until, by repetition, they've come to seem generally accepted. I used to repeat these figures myself, before I learned more about how they were generated. Being born intersex is presented as rare; less common, say, than being born with Down's syndrome.

These estimates are off by more than a factor of 10.

A true, conservative estimate is that more than 1 in 150 people are born with intersex bodies. In this post, I'm going to explain why the true commonplace of intersexuality is so widely underestimated. And yes, I'll justify my 1 in 150 estimate by the end.

There are two main reasons reasons why nobody can give you an exact figure for how many people are intersex. The first is that there is nobody gathering this data. And the second is that in trying to come up with an estimate, people rely on medical diagnostic categories that purposefully deny that many people with sexually-intermediate bodies are “really intersex.”

Let's begin with the matter of gathering data on who is intersex. A central problem we run into is that nobody is funding a cross-condition population study of sex variance. This is the case in part, ironically, because being intersex is perceived as a rare thing. In addition, being intersex is framed as a “treatable medical condition.” Thus, there's little sense of intersexuality being an urgent matter to prompt government or private entities to fund a large exploratory study. But even if a large study of all physical sex variance were to be funded, you'd run into problems with people not wanting to disclose their bodily statuses. Some intersex conditions are obvious at birth when children have visible genital variance. But these children are immediately assigned a dyadic sex, male or female, on their birth certificates. The children and their parents are told by doctors that they must conceal the childrens' “defect.” With both the medical profession and our society at large treating intersex status as something freakish and shameful, people who are born visibly intersex are usually extremely closeted about their status, and don't want to be studied, outed, exposed. They are unlikely to want to take part in studies.

Furthermore, many people are intersex without it being genitally obvious. Some people are chromosomally sex-variant: they have a genotype such as XYY or XXY that is not associated with a significant disability, or they are XY women or XX men. Such people may never find out that they are intersex—after all, have you ever had your sex chromosomes screened? Other people have variant internal reproductive organs. I, for example, had an ovotestis, a gonad intermediate between an ovary and a testis. I'd been told I had a supernumerary ovary after pelvic exploratory surgery, and it was only years later, after I'd had my internal reproductive organs removed, that a pathologist informed me it was actually an ovotestis. What this illustrates is that in order to do a mass study of the frequency of intersexuality, you can't just rely on interviews and on existing medical records. One would have to do extensive medical testing, including biopsies, of all the people studied, which would be very invasive.

Even if you were somehow able to get a large, representative, random subpopulation of people to agree to be genitally examined, hormone-screened, genotyped, CAT-scanned, and to have their gonads biopsied, the frequency of intersexuality would be drastically underestimated. And that is because of the second problem I mentioned: that of medical diagnostic categories.

Let's think commonsensically and rationally for a moment.

What does it mean to be intersex? Logically, it means that a person has a body that is intermediate between the idealized male and female poles of the sex spectrum. All of us start out in the womb with an intersex form, having a phalloclitoris, labioscrotum, and ovotestes (you can read more about this in this post). It's expected that these should differentiate as we develop, but in fact one or more elements of the sexual anatomy may stay fully intermediate, or may differentiate only partially. Any person who has a body that is not fully sex-differentiated is, logically speaking, intersex.

But medical diagnostic categories are not logical, despite our ideology that they should be so. The majority of individuals born with intermediate sexual anatomies are not given an intersex diagnosis. I believe that what underlies this is gender ideology. And that gender ideology is this: masculinity is fragile, especially when it comes to what a man has in his pants. To live as a man with an inadequate penis is seen as intolerable. To have one's status as a “real man” challenged is viewed as psychologically crushing. Thus, doctors feel, if they were to categorize someone as intersex and then assign them male, they would be acting cruelly. Women, on the other hand, are perceived as more gender-flexible. After all, it's reasoned, a woman isn't shamed by wearing pants or taking on a power career. Viewing female-assigned people as more comfortable with androgyny and as better at dealing with emotional challenges, doctors believe that if they diagnose someone as intersex, they should assign them to the female category.

Thus, under current the current regime of medical diagnosis and treatment, the large majority of people labeled by doctors as intersex are assigned female at birth. People who are diagnosed under the rubric of “female pseudohermaphrodites" (a ridiculous term devised in the 19th century for intersex people with ovaries and intermediate genitalia or a phallus) are assigned female, and their phalli are surgically removed. People who are diagnosed under the rubric of “male pseudohermaphrodites,” with internal testes and genitals that are intermediate or vulvic, are also assigned female, and their testes removed.

Under this regime, most people—including academic gender scholars, doctors, and even a substantial number of intersex activists—believe that “almost all intersex people are assigned female at birth.”

You'll find this statement oft-repeated, but it's not true. At least as many babies with sex-variant bodies are assigned male at birth. It's just that the majority of them are not diagnosed as “true hermaphrodites” or “pseudohermaphrodites.” Many, for example, are characterized as “real boys” with a "urethral malformation." The diagnosis they receive is “hypospadias.”

Hypospadias occurs when a person develops testes, but the phalloclitoris is intermediate in form. People with hypospadias can fall anywhere on the sex spectrum from having fully intermediate genital configurations to having forms little different from what is considered typically male. (You can find illustrations midway down the page here.) In cases of what is termed “first degree hypospadias,” the person has close to idealized male anatomy, but the urethra opens on the underside of the penile glans. As the degree of hypospadias increases, the opening is lower on the phallic shaft, and is larger and more vulvic in form. In perineal hypospadias, there is a substantial vagina, the phalloclitoris is intermediate in structure, and the testes may be internal. And the bodily variance is not limited to the external genitalia. Hypospadias is associated with an enlarged prostatic utricle, which may vary from a slight enlargement with low degree hypospadias, to a full-sized uterus in high degree hypospadias.

Rationally speaking, people with hypospadias are intersex. They share with other intersex people not only sex-variant anatomy, but the common experience of imposed genital-normalizing surgery in childhood, and the unwanted consequences of loss of sensation, infections, scarring and fistulae. And while individuals with mild hypospadias appear to be almost as likely to identify with their assigned sex as individuals with typical phalli, those with advanced degrees of hypospadias are much more likely to suffer from gender dysphoria with their male assignment. For medicine not to acknowledge that hypospadias is an intersex condition seems not only nonsensical, but often cruel. It may be true that people born with hypospadias who identify as male don't want to be publicly labeled intersex, just as male-identified people don't often buy T-shirts that say “Ask me about my erectile dysfunction!” or “Just call me Cocktail Wiener.” But our cultural obsession with male-classified people having large erections and unquestionable male status should not dictate medical diagnostic categories.

Now, here comes the kicker.

According to the CDC, hypospadias occurs in the U.S. in one in 125 children labeled as “boys,” or 1 in 250 births. In other words, if we looked only at this one condition, the minimum rate of intersexuality is 1 in 250.

There are other intersex conditions that are not diagnosed as such, though they are medically treated in the same way as other intersex conditions. Consider “clitoromegaly” and “micropenis,” the diagnostic terms for people with a clitorophallus of intermediate size. A child born with clitoromegaly is assigned to the female category, and today in the U.S. is given “clitoral reduction” surgery in the same way that a child diagnosed as a “female pseudohermaphrodite” is altered. Children born with micropenis in the U.S. are classified as boys, and must often endure surgical and hormonal interventions (sometimes even what is officially termed infant sex reassignment to female status). Yet individuals with clitoromegaly and micropenis are often not diagnosed as “offically intersex.”

So let us just look at individuals born with genitally intermediate bodies who are assigned male at birth. Micropenis occurs in 0.6% of male-classified people, or 0.3% of the population. Hypospadias occurs in 0.8% of male-classified people, or 0.4% of the population. Just looking at these two conditions, 0.7% of the population is born sex-variant. In other words, translating to odds, 1 in 142 people has either hypospadias or micropenis. That's more than 1 in 150.

We now see what happens when we employ the rational rule of classifying anyone who is genitally, gonadally or chromosomally intermediate as intersex. We logically include people with hypospadias and micropenis in the intersex category instead of excluding all conditions in which infants are assigned male. Now, for the sake of argument, let's just accept at face value the assertion that all other intersex statuses are so rare that the chances of having any other variation in gonads, genitals or chromosomes is 1 in 2500. I consider this extremely unlikely, but we'll just go with it. In fact, for the sake of our argument let's accept the ridiculous assertion a medical student once made to me: that there have only been 7 “real hermaphrodites” ever encountered in all of recorded medical history. By this logic, the chance of having any other intersex variation is 1 in a billion, or to simplify, basically 0. But we're still left with a minimum of 1 in 142 individuals having an intersex body.

That puts being intersex about on par with the likelihood of having green eyes.

Personally, I believe the rate is much higher. I do think it's unlikely we'll ever come up with an unquestionable exact number of intersex people, even if we get study funding and widespread permission from study populations, and even if medical diagnostic categories cease to be so irrational. Sex is a spectrum, and any way we slice up a spectrum is arbitrary and open to debate. (I remember my mother and grandmother perpetually arguing over whether the color turquoise was “really blue” or “really green,” and one could have similar endless arguments over the point at which an intermediate phalloclitoris is sufficently large-headed to “count” as a penis or sufficiently small-headed to “count” as a clitoris.) But at a very conservative minimum, more than 1 in 150 people have sexually intermediate bodies.

So the next time someone tells you that intersexuality is extremely rare, tell them otherwise. The next time you see a book about pregnancy that talks about uncommon complications and rare infant differences but never mentions how often babies are born intersex, raise a fuss. If you hear the old saw that “all intersex people are assigned female at birth,” clear up that misunderstanding. Be aware and help make others aware that the problems facing intersex people are not sad rarities, but burdens faced by many (over 2 million in the U.S. alone). And if you yourself are intersex and living a life in closeted shame, I urge you to stop believing you must live your life isolated and alone. You have a lot of siblings out there.

Sunday, February 5, 2012

On Sex/Gender Checkboxes

Day in and day out, sex and gender minorities are boxed in by being confronted with sex/gender checkboxes. This starts the moment we are born, when a binary sex must be checked on our birth certificates: “male” or “female.” For individuals who are born with visibly intersex bodies, this requirement causes a crisis. Families and doctors make hasty decisions about which box they'll force us into, and we have to live with the consequences all of our lives. Having checked off a binary “M” or “F,” those with authority over our infant bodies often feel that trying to reshape our bodies conform to the box they've picked is unavoidable. Thus, genital surgeries are routinely performed, despite the deep unhappiness so many intersex people voice about the results as adults. Great pain might be avoided if parents were allowed to acknowledge our physical truth on birth certificates which included an intersex checkbox, or if the gender marker requirement were simply removed.

For people who are trans gender, gender transitioning is made traumatic in large part due to the checkboxes we must face daily. Binary gender markers are everywhere: on our drivers' licenses and passports, on loan applications and job applications, and on websites everywhere (from Facebook to shopping sites to online radio stations). Once you've checked off one box, changing it is bureaucratically and legally difficult—and sometimes there's no way to change it at all. This leads to all sorts of hassles and embarrassment, as we're “outed” in odd contexts. Worse still, if the gender we're living in doesn't match the marker on our ID, we're subject to being banned from flying, arrested by bigoted police officers, and denied employment.

For folks who don't identify with a binary gender, the world of checkboxes constantly denies our very existence. We go institutionally unrecognized, with no way to even try to say “I am here!”

Sex and gender minorities have some protection in institutional settings that bar discrimination on the basis not only of sex, but of gender identity or expression. But often, such policies are adopted with no follow-through on what it really means for a university or company or city to protect gender identity and expression. Unaware of our needs, administrators think only of ensuring that trans people aren't being kicked out just for gender transitioning. While this is certainly important, there are many more needs that must be addressed. And central among these are that sex/gender checkboxes protect the rights of sex and gender minorities.

I have written a Best Practices guide that is under discussion at my university. It lays out a plan for rewriting sex/gender checkboxes that is meant to address the needs of intersex, trans gender, and gender variant people, in this case, in a university setting. There are some inevitable compromises in it between institutional desires for simplicity and brevity, and our desires as individuals to have our identities recognized in all of their fullness and uniqueness. But I wanted to share it here so that other people who are looking for a guideline to use in seeking to better the way institutions around them limit sex/gender choices would have something to start with. It doesn't address the problem of birth certificates, for example, since universities don't issue them. It does, however, address the question of how sex and gender and sexuality should be measured in research in some detail.

Please feel free to share and employ at will.

Best Practices for Identification of Sex/Gender

Compiled by Dr. Cary Gabriel Costello

I. Foundational Principles
Institutions which commit themselves to protecting against discrimination on the basis of sex and of gender identity or expression (GIE) must give individuals the right to self-identify their sex/gender.
Whenever data are gathered about sex/gender, the rights of GIE minorities (intersex individuals, trans men, trans women, and individuals with alternative gender identities) must be protected.

II. Definitions
“GIE minorities” include intersex individuals, trans gender individuals (trans men, trans women, and individuals with alternative gender identities), and people with variant gender expression.

Intersex Persons
While it is common to believe that sex is binary—that is, that all people are born either male or female—in fact, sexual characteristics exist as a spectrum. There is a great deal of variation in chromosomes (XX, XY, XXY, XYY, etc.), hormones (relative levels of estrogen, progesterone and testosterone), secondary sexual characteristics (breasts, hair distribution, etc.) genital configurations, and gonads (ovaries, ovotestes, testes). Intersex people are individuals whose sexual characteristics fall toward the middle of the spectrum. Approximately 1 in 150 people are intersexed according to medical diagnostic criteria. Most are very private about this status, though some are public about it.

Trans Gender Individuals
Individuals whose gender identity does not match the sex they were assigned at birth are deemed trans gender. A trans man was assigned female at birth but identifies as male; a trans woman was assigned male at birth but identifies as female; a genderqueer individual may identify as neither male nor female. Trans gender individuals often transition to their sex of identification, though they may do so in different ways. Some transition socially by changing name, pronoun, and dress. Others also take hormones (testosterone or estrogen/progesterone) to alter their bodies. In addition, some get surgery to change their chests or genitalia. Because surgery is quite expensive, may not be covered by insurance, and because it carries serious risks, many trans gender individuals in the U.S. do not seek or are unable to access surgical transition services.

Variant Gender Expression
People of any sex or gender may have an atypical gender presentation—male femininity, female masculinity, or androgyny.

III. Best Practices in Collecting Data about Sex/Gender

The best practices for collecting data about sex/gender depend on context. If collecting data about sex/gender serves no purpose for the individuals from whom it is collected, then eliminating the question is the best practice. If data are being gathered to protect the rights and well-being of individuals, then individuals should be given self-identification options that allow GIE minorities to self-identify. These options include a shorter form for ordinary uses, and longer forms to be employed in research contexts.

Eliminating Unnecessary Requirements for Individual Sex/Gender Identification
There are many institutional contexts in which people are routinely asked to identify their sex/gender based on common marketing practices or institutional tradition rather than an intent to protect the individuals from discrimination on the basis of their sex/gender. (For example, this is a common requirement in registering to use website services.) In this situation, the best practice is simply to eliminate the unnecessary requirement of declaring sex/gender.

Standard Best Practices Short Form for Sex/Gender Identifications
In contexts in which data is collected order to ensure equal treatment and respect for all, information about sex/gender should be collected in a manner that protects GIE minorities. The goal in implementing sex/gender categories for general data collection is to protect the rights of all people, whatever their physical sex status or gender identity, including intersex individuals, trans men and trans women, and individuals with alternative gender identities. Thus, the inappropriate single question (“Sex: Male__, Female__”) should be replaced with a three-stage approach.
  1. Gender identity: Woman __, Man __, Alternate Self-identification (please write in) ______________.
  2. Do you have an intersex condition (disorder of sex development)? Yes__, No__.
  3. Are you trans gender? Yes__, No__.
In order also to ensure nondiscrimination on the basis of sexual orientation, best practices add a fourth question unrelated to GIE:
  1. Sexual orientation: Heterosexual __, Lesbian__,  Gay__, Bisexual__, Queer__, Pansexual__, Asexual__, Alternate Self-identification (please write in) ______________.
AVOID poor practices which undermine individuals' identities instead of protecting them. A common poor practice is to use a single additional checkbox: “Male__, Female__, Transgender___.” This is inappropriate for several reasons. First, it does not allow intersex individuals a way to identify themselves. Secondly, it discriminates against trans men and trans women by framing trans gender identification as incompatible with “real” male or female status. And thirdly, it does not allow for recognition of the distinct needs and identities of individuals who identify as neither male nor female.

Best Practices Long Forms for Research Contexts

Data about sex and gender are often collected in the course of research. If data are to be analyzed along the dimensions of sex and/or gender, two sets of needs must be met. The first relate to the rights of research subjects, who must be protected from harm, including the harm of discrimination on the bases of sex, gender identity or gender expression. In conducting research with human subjects, researchers will inevitably recruit research subjects who are intersex, trans gender, or variant in their gender expression, and are ethically obliged to treat them with respect. The second issue relates to the need of the researcher to have research questions carefully worded in a manner that subjects will understand and respond to in a reliable and valid manner.

Many scientific studies today continue to use “sex” as an independent variable, and measure this in a binary fashion. This is a methodological flaw, as well as discriminating against GIE minorities. It does not allow the researcher to measure what actually accounts for observed variance in the dependent variable: is it physical sex status, internal gender identity, gender-conformity or nonconformity? Just as a study that uses religion as an independent variable is improved when it not only identifies subjects as “Christian,” but allows the subjects to identify a more specific denomination, asks them how religiously observant they consider themselves, and inquires as to how often they attend church, increasing the sophistication of sex/gender questions improves study results.  The following measures are suggested:
  1. What gender do you identify with? Man__, Woman__, Other (please write in the identity)________________.
  2. What sex category were assigned at birth? Male__, Female__.
  3. As far as you know, were you born with an intersex or sex variant body? Yes__, No__.
  4. Please indicate how masculine or feminine you are in your dress and manner on the following scale: (1) very masculine, (2) moderately masculine, (3) a bit masculine, (4) androgynous, (5) a bit feminine, (6) moderately feminine, (7) very feminine.
In order also to ensure the study is not discriminating on the basis of sexual orientation, and to gather better data, best practices suggest that subjects also be surveyed on their sexual identity. Problems are often raised by the traditional method of asking subjects if they are “heterosexual, homosexual, or bisexual.” For example, people who are gender transitioning or who identify as neither male nor female are often unable to use these sexual orientation categories to classify themselves. Furthermore, it is well established that there is a difference between how many people identify their sexual orientation and the sexual activities in which they actually engage. This may be addressed through questions such as the following:
  1. To whom are you attracted, sexually and romantically? (1) only men, (2) mostly men, (3) a bit more toward men than toward women, (4) equally toward men and women, (5) a bit toward women than men, (6) mostly women, (7) only women.
  2. With whom have you been sexually involved? (1) only men, (2) mostly men, (3) a bit more men than women, (4) equally men and women, (5) a bit women than men, (6) mostly women, (7) only women.
  3. Are the people to whom you are attracted (1) very masculine, (2) moderately masculine, (3) a bit masculine, (4) androgynous, (5) a bit feminine, (6) moderately feminine, (7) very feminine.
  4. Consider the idea of a partner who identifies as neither male nor female, but as some other gender such as “genderqueer.” Do you find that (1) very appealing, (2) moderately appealing, (3) a bit appealing, (4) I feel neutral about it, (5) a bit unappealing, (6) moderately unappealing, (7) very unappealing.
Researchers who choose specifically to study GIE minorities should consider them a vulnerable subject pool for IRB human subject protection purposes. In cases of studies recruiting intersex, trans gender, or gender-variant subjects, procedures should be set in place to protect these vulnerable subjects, and the questions asked about sex and gender carefully designed to accord all subjects with full respect for persons. Confidentiality should be strictly protected, data collected in a location where subjects will not be at risk of having others see or overhear their responses, and information sheets listing appropriate support groups and links to mental health resources distributed to those recruited to participate.