Commentary Human Rights

Why I’m Disturbed by Screening for Intersex Traits in Utero

Claudia Astorino

I strongly feel that safe, legal abortion must be accessible for everyone, including intersex folks like me. But I also want to question why our society is attempting to erase intersex people, either before or after birth.

As an avid proponent of reproductive rights, I strongly feel that safe, legal abortion must be accessible for everyone, including trans* people, gender-nonconforming people, and intersex folks like me. That being said, I’m concerned—disturbed, really—by an increasingly common feature of prenatal care that’s affecting my community: screening for intersex traits in utero, and making reproductive decisions based on that screening.

And I can’t help but feel that this simply isn’t OK.

Since the 1990s, intersex activists have advocated for the right to bodily autonomy, first in the United Kingdom, later in the United States, and now globally. We’ve been working to end the practice of using medical means to solve a social problem: that people are uncomfortable with intersex bodies. To this end, we’ve been educating others that intersex people exist, what intersex means, and why the routine medical practices used to alter our bodies without our consent must end. Recently, however, intersex activists have become aware that in addition to speaking out against how intersex people are treated after birth, we need to talk about the fact that intersex people are being prevented from being born in the first place.

Intersex people are those who have a combination of traits traditionally considered “male” or “female” in the same body—and sometimes additional traits uncommon for typical male or female individuals. While external genital form is the trait most commonly thought of by those unfamiliar with intersex people, being intersex is not specifically about genitals at all, and not all intersex people have atypical genital form. There are many different way our bodies look and function. Knowing that an individual is intersex actually tells you very little about who they are, what their bodies look like, and how they identify. Intersex is more of an umbrella term that encompasses all the variations in what people can look like in terms of sex anatomy. Intersex people are often seen as being outside of “normal” male and female bodies, but we’re really a part of the natural variation in biological sex.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

The harmful framing of intersex people as a problem to be “fixed” largely grew out work by the New Zealand psychologist John Money in the 1950s, who argued that children could be happily raised as boys or girls regardless of their biology at birth with a supportive environment that reinforced the child’s assigned (what we today call) gender. Additionally, Money advocated that physically altering intersex children’s bodies to conform more closely to their assigned gender identity would reinforce that they were “normal” boys and girls, and recommended that surgeries be performed when children were very young so they wouldn’t be negatively affected in adulthood by remembering childhood procedures.

Money’s most famous case supposedly supporting these ideas was that of David Reimer, who was not intersex, but whose parents raised him as a girl on Money’s recommendation. Reimer had a circumcision that did not proceed as planned and his family felt he could not be raised as a boy without a “normal” penis. When Reimer was socialized as female in his younger years, Money declared his philosophy and methods successful and recommended them to “fix” intersex people. While Reimer ultimately did not continue to identify as female (he lived as a man before tragically committing suicide in his 30s), the legacy of Money’s ideas are still often considered legitimate by clinicians—and by society.

When being intersex is framed as a medical problem, parents and doctors are given proxy consent to make decisions about our bodies—decisions they aren’t really entitled to make. This is why cosmetic surgeries and/or other medical “treatments” have continued to be routinely performed on intersex babies and young children. Parents and doctors make decisions to alter the bodies of intersex kids, even though these procedures aren’t for medical benefits and children can’t consent to them.

We deserve so much better.

While intersex activists are fighting mainly for bodily autonomy, many of us have noted that screening for certain forms of being intersex has become increasingly common, the outcomes of which are unsettling at best. Surgeries and other treatments after birth and post-screening abortion are both performed to prevent intersex traits, especially atypical genitals—but it’s more than that. They are both ways to prevent people who don’t clearly fall into male or female categories from existing, because the fact that this happens makes people uncomfortable.

First of all, fetal screening isn’t necessarily effective for many forms of being intersex: Typical males, typical females, and people who are intersex often share the same chromosome makeup, or karyotype. Even if a karyotype suggesting intersex traits is known, doctors may be unable to confirm intersex traits in a fetus when atypical genital form isn’t present (or simply can’t be confirmed) via ultrasound.

And when apparently intersex traits are detected in a fetus, clinical facilities often describe being intersex with stigmatized language that, again, automatically—and egregiously—equates having intersex traits with having a medical condition. For example, one form of being intersex that can more easily be screened for in utero is congenital adrenal hyperplasia (CAH), in which more testosterone than average is produced by the body. CAH individuals may have XX or XY chromosomes, and depending on testosterone production may exhibit traits such as atypical external genital form. Some CAH people may also exhibit “salt-wasting,” or excess salt and water loss in urine—which, unlike atypical genital form, is an actual medical concern and requires treatment. However, this does not mean that the CAH form of being intersex is itself a medical condition. After all, ovarian cancer is a medical concern that is mostly exhibited by typical women, but this correlation does not make being a woman a medical condition.

When learning their child or fetus is intersex, the information that prospective parents receive from doctors can vary substantially. Some doctors make it clear that people perceive intersex individuals differently: Some advocate that intersex people don’t have medical conditions that need to be “fixed,” while others think they do. Other doctors simply present being intersex uncritically as a medical problem. It all depends on the doctor and their viewpoints. It also depends on the parents themselves: They may not have heard about intersex people before, or may not have access to resources to learn more. Plus, if health-care providers are using a lot of scientific jargon to explain how development works, parents may wind up more confused and scared than they were before—and ultimately believe there is something wrong with their fetus or child.

After CAH is identified during pregnancy, the prospective parent or parents can make several choices. The fetus may be allowed to develop naturally, which is strongly recommend by intersex activists. Alternatively, the fetus may be treated with the enormously controversial drug dexamethasone, which may prevent the development of certain CAH characteristics like atypical genital form, but may be harmful for fetal development and is not recommended by some doctors.

The final option is to abort the fetus that would be born an intersex child.

Sadly, there are many reasons intersex children are considered undesirable by prospective parents. They may not understand what intersex means and are afraid to have a child that cannot be easily categorized as male or female. There are many scenarios parents fear where others may react negatively to their intersex child: when the baby-sitter changes a diaper, when company sees their child running around without pants on, when family or friends or strangers ask, “Is it a boy or a girl?” and they’re not sure how to answer that question. Parents also fear their baby may grow up be gay or gender non-conforming because of a fundamental misunderstanding about body parts, sex, gender, and sexual orientation—which are different things and can’t be conflated into a single mish-mashed category. Parents feel the pressure to make the best decisions to protect their child and offer them a safe, “normal” life. Parents may feel that without medical intervention, they can’t give this kind of life to a child. Maybe some feel like it’s too big a risk to bring them into the world at all.

Prospective parents of intersex kids are afraid of a lot of things.

As an intersex person, it’s difficult for me to understand why we’re perceived as so scary that we’re unwelcome to exist in the world. I have had, and continue to have, difficulty reconciling my strong belief that all pregnant persons must have the right to choose to obtain an abortion with my anger and sadness that someone who wants to raise a healthy, beautiful child would choose not to raise that healthy, beautiful child if they were intersex.

I want to protect the right to choose. I also want to question why our society is attempting to erase intersex people, either before or after birth. Both aborting intersex fetuses and cosmetically (often surgically) altering intersex children’s bodies are ways to make intersex people disappear, go away. The implied message is that acceptable people aren’t intersex: Don’t be intersex, or don’t be at all.

I can’t endorse this kind of thinking. I want to live in a world with intersex people like me in it, where our bodies and personhood are valued. We need to raise awareness that intersex people exist, accept that intersex people are not medical conditions that need to be “fixed,” and celebrate intersex people and bodies as we naturally are. I’m admittedly just a little bit biased, but I think we’re pretty great, if I may say so myself. But without more awareness of these things, I’m afraid there won’t be many of us in the future. That’s not a world I want to live in.

I encourage all reproductive persons to be open to having a fantastic intersex person in their lives. We are very much worth choosing.

Commentary Sexual Health

Parents, Educators Can Support Pediatricians in Providing Comprehensive Sexuality Education

Nicole Cushman

While medical systems will need to evolve to address the challenges preventing pediatricians from sharing medically accurate and age-appropriate information about sexuality with their patients, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Last week, the American Academy of Pediatrics (AAP) released a clinical report outlining guidance for pediatricians on providing sexuality education to the children and adolescents in their care. As one of the most influential medical associations in the country, AAP brings, with this report, added weight to longstanding calls for comprehensive sex education.

The report offers guidance for clinicians on incorporating conversations about sexual and reproductive health into routine medical visits and summarizes the research supporting comprehensive sexuality education. It acknowledges the crucial role pediatricians play in supporting their patients’ healthy development, making them key stakeholders in the promotion of young people’s sexual health. Ultimately, the report could bolster efforts by parents and educators to increase access to comprehensive sexuality education and better equip young people to grow into sexually healthy adults.

But, while the guidance provides persuasive, evidence-backed encouragement for pediatricians to speak with parents and children and normalize sexual development, the report does not acknowledge some of the practical challenges to implementing such recommendations—for pediatricians as well as parents and school staff. Articulating these real-world challenges (and strategies for overcoming them) is essential to ensuring the report does not wind up yet another publication collecting proverbial dust on bookshelves.

The AAP report does lay the groundwork for pediatricians to initiate conversations including medically accurate and age-appropriate information about sexuality, and there is plenty in the guidelines to be enthusiastic about. Specifically, the report acknowledges something sexuality educators have long known—that a simple anatomy lesson is not sufficient. According to the AAP, sexuality education should address interpersonal relationships, body image, sexual orientation, gender identity, and reproductive rights as part of a comprehensive conversation about sexual health.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

The report further acknowledges that young people with disabilities, chronic health conditions, and other special needs also need age- and developmentally appropriate sex education, and it suggests resources for providing care to LGBTQ young people. Importantly, the AAP rejects abstinence-only approaches as ineffective and endorses comprehensive sexuality education.

It is clear that such guidance is sorely needed. Previous studies have shown that pediatricians have not been successful at having conversations with their patients about sexuality. One study found that one in three adolescents did not receive any information about sexuality from their pediatrician during health maintenance visits, and those conversations that did occur lasted less than 40 seconds, on average. Another analysis showed that, among sexually experienced adolescents, only a quarter of girls and one-fifth of boys had received information from a health-care provider about sexually transmitted infections or HIV in the last year. 

There are a number of factors at play preventing pediatricians from having these conversations. Beyond parental pushback and anti-choice resistance to comprehensive sex education, which Martha Kempner has covered in depth for Rewire, doctor visits are often limited in time and are not usually scheduled to allow for the kind of discussion needed to build a doctor-patient relationship that would be conducive to providing sexuality education. Doctors also may not get needed in-depth training to initiate and sustain these important, ongoing conversations with patients and their families.

The report notes that children and adolescents prefer a pediatrician who is nonjudgmental and comfortable discussing sexuality, answering questions and addressing concerns, but these interpersonal skills must be developed and honed through clinical training and practice. In order to fully implement the AAP’s recommendations, medical school curricula and residency training programs would need to devote time to building new doctors’ comfort with issues surrounding sexuality, interpersonal skills for navigating tough conversations, and knowledge and skills necessary for providing LGBTQ-friendly care.

As AAP explains in the report, sex education should come from many sources—schools, communities, medical offices, and homes. It lays out what can be a powerful partnership between parents, doctors, and educators in providing the age-appropriate and truly comprehensive sexuality education that young people need and deserve. While medical systems will need to evolve to address the challenges outlined above, there are several things I recommend parents and educators do to reinforce AAP’s guidance.

Parents and Caregivers: 

  • When selecting a pediatrician for your child, ask potential doctors about their approach to sexuality education. Make sure your doctor knows that you want your child to receive comprehensive, medically accurate information about a range of issues pertaining to sexuality and sexual health.
  • Talk with your child at home about sex and sexuality. Before a doctor’s visit, help your child prepare by encouraging them to think about any questions they may have for the doctor about their body, sexual feelings, or personal safety. After the visit, check in with your child to make sure their questions were answered.
  • Find out how your child’s school approaches sexuality education. Make sure school administrators, teachers, and school board members know that you support age-appropriate, comprehensive sex education that will complement the information provided by you and your child’s pediatrician.

School Staff and Educators: 

  • Maintain a referral list of pediatricians for parents to consult. When screening doctors for inclusion on the list, ask them how they approach sexuality education with patients and their families.
  • Involve supportive pediatricians in sex education curriculum review committees. Medical professionals can provide important perspective on what constitutes medically accurate, age- and developmentally-appropriate content when selecting or adapting curriculum materials for sex education classes.
  • Adopt sex-education policies and curricula that are comprehensive and inclusive of all young people, regardless of sexual orientation or gender identity. Ensure that teachers receive the training and support they need to provide high-quality sex education to their students.

The AAP clinical report provides an important step toward ensuring that young people receive sexuality education that supports their healthy sexual development. If adopted widely by pediatricians—in partnership with parents and schools—the report’s recommendations could contribute to a sea change in providing young people with the care and support they need.

Roundups Sexual Health

This Week in Sex: The Sexually Transmitted Infections Edition

Martha Kempner

A new Zika case suggests the virus can be transmitted from an infected woman to a male partner. And, in other news, HPV-related cancers are on the rise, and an experimental chlamydia vaccine shows signs of promise.

This Week in Sex is a weekly summary of news and research related to sexual behavior, sexuality education, contraception, STIs, and more.

Zika May Have Been Sexually Transmitted From a Woman to Her Male Partner

A new case suggests that males may be infected with the Zika virus through unprotected sex with female partners. Researchers have known for a while that men can infect their partners through penetrative sexual intercourse, but this is the first suspected case of sexual transmission from a woman.

The case involves a New York City woman who is in her early 20s and traveled to a country with high rates of the mosquito-borne virus (her name and the specific country where she traveled have not been released). The woman, who experienced stomach cramps and a headache while waiting for her flight back to New York, reported one act of sexual intercourse without a condom the day she returned from her trip. The following day, her symptoms became worse and included fever, fatigue, a rash, and tingling in her hands and feet. Two days later, she visited her primary-care provider and tests confirmed she had the Zika virus.

Like This Story?

Your $10 tax-deductible contribution helps support our research, reporting, and analysis.

Donate Now

A few days after that (seven days after intercourse), her male partner, also in his 20s, began feeling similar symptoms. He had a rash, a fever, and also conjunctivitis (pink eye). He, too, was diagnosed with Zika. After meeting with him, public health officials in the New York City confirmed that he had not traveled out of the country nor had he been recently bit by a mosquito. This leaves sexual transmission from his partner as the most likely cause of his infection, though further tests are being done.

The Centers for Disease Control and Prevention (CDC)’s recommendations for preventing Zika have been based on the assumption that virus was spread from a male to a receptive partner. Therefore the recommendations had been that pregnant women whose male partners had traveled or lived in a place where Zika virus is spreading use condoms or abstain from sex during the pregnancy. For those couples for whom pregnancy is not an issue, the CDC recommended that men who had traveled to countries with Zika outbreaks and had symptoms of the virus, use condoms or abstain from sex for six months after their trip. It also suggested that men who traveled but don’t have symptoms use condoms for at least eight weeks.

Based on this case—the first to suggest female-to-male transmission—the CDC may extend these recommendations to couples in which a female traveled to a country with an outbreak.

More Signs of Gonorrhea’s Growing Antibiotic Resistance

Last week, the CDC released new data on gonorrhea and warned once again that the bacteria that causes this common sexually transmitted infection (STI) is becoming resistant to the antibiotics used to treat it.

There are about 350,000 cases of gonorrhea reported each year, but it is estimated that 800,000 cases really occur with many going undiagnosed and untreated. Once easily treatable with antibiotics, the bacteria Neisseria gonorrhoeae has steadily gained resistance to whole classes of antibiotics over the decades. By the 1980s, penicillin no longer worked to treat it, and in 2007 the CDC stopped recommending the use of fluoroquinolones. Now, cephalosporins are the only class of drugs that work. The recommended treatment involves a combination of ceftriaxone (an injectable cephalosporin) and azithromycin (an oral antibiotic).

Unfortunately, the data released last week—which comes from analysis of more than 5,000 samples of gonorrhea (called isolates) collected from STI clinics across the country—shows that the bacteria is developing resistance to these drugs as well. In fact, the percentage of gonorrhea isolates with decreased susceptibility to azithromycin increased more than 300 percent between 2013 and 2014 (from 0.6 percent to 2.5 percent).

Though no cases of treatment failure has been reported in the United States, this is a troubling sign of what may be coming. Dr. Gail Bolan, director of CDC’s Division of STD Prevention, said in a press release: “It is unclear how long the combination therapy of azithromycin and ceftriaxone will be effective if the increases in resistance persists. We need to push forward on multiple fronts to ensure we can continue offering successful treatment to those who need it.”

HPV-Related Cancers Up Despite Vaccine 

The CDC also released new data this month showing an increase in HPV-associated cancers between 2008 and 2012 compared with the previous five-year period. HPV or human papillomavirus is an extremely common sexually transmitted infection. In fact, HPV is so common that the CDC believes most sexually active adults will get it at some point in their lives. Many cases of HPV clear spontaneously with no medical intervention, but certain types of the virus cause cancer of the cervix, vulva, penis, anus, mouth, and neck.

The CDC’s new data suggests that an average of 38,793 HPV-associated cancers were diagnosed each year between 2008 and 2012. This is a 17 percent increase from about 33,000 each year between 2004 and 2008. This is a particularly unfortunate trend given that the newest available vaccine—Gardasil 9—can prevent the types of HPV most often linked to cancer. In fact, researchers estimated that the majority of cancers found in the recent data (about 28,000 each year) were caused by types of the virus that could be prevented by the vaccine.

Unfortunately, as Rewire has reported, the vaccine is often mired in controversy and far fewer young people have received it than get most other recommended vaccines. In 2014, only 40 percent of girls and 22 percent of boys ages 13 to 17 had received all three recommended doses of the vaccine. In comparison, nearly 80 percent of young people in this age group had received the vaccine that protects against meningitis.

In response to the newest data, Dr. Electra Paskett, co-director of the Cancer Control Research Program at the Ohio State University Comprehensive Cancer Center, told HealthDay:

In order to increase HPV vaccination rates, we must change the perception of the HPV vaccine from something that prevents a sexually transmitted disease to a vaccine that prevents cancer. Every parent should ask the question: If there was a vaccine I could give my child that would prevent them from developing six different cancers, would I give it to them? The answer would be a resounding yes—and we would have a dramatic decrease in HPV-related cancers across the globe.

Making Inroads Toward a Chlamydia Vaccine

An article published in the journal Vaccine shows that researchers have made progress with a new vaccine to prevent chlamydia. According to lead researcher David Bulir of the M. G. DeGroote Institute for Infectious Disease Research at Canada’s McMaster University, efforts to create a vaccine have been underway for decades, but this is the first formulation to show success.

In 2014, there were 1.4 million reported cases of chlamydia in the United States. While this bacterial infection can be easily treated with antibiotics, it often goes undiagnosed because many people show no symptoms. Untreated chlamydia can lead to pelvic inflammatory disease, which can leave scar tissue in the fallopian tubes or uterus and ultimately result in infertility.

The experimental vaccine was created by Canadian researchers who used pieces of the bacteria that causes chlamydia to form an antigen they called BD584. The hope was that the antigen could prompt the body’s immune system to fight the chlamydia bacteria if exposed to it.

Researchers gave BD584 to mice using a nasal spray, and then exposed them to chlamydia. The results were very promising. The mice who received the spray cleared the infection faster than the mice who did not. Moreover, the mice given the nasal spray were less likely to show symptoms of infection, such as bacterial shedding from the vagina or fluid blockages of the fallopian tubes.

There are many steps to go before this vaccine could become available. The researchers need to test it on other strains of the bacteria and in other animals before testing it in humans. And, of course, experience with the HPV vaccine shows that there’s work to be done to make sure people get vaccines that prevent STIs even after they’re invented. Nonetheless, a vaccine to prevent chlamydia would be a great victory in our ongoing fight against STIs and their health consequences, and we here at This Week in Sex are happy to end on a bit of a positive note.