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It is estimated that up to 1.7 percent of the population has an intersex trait and that approximately 0.5 percent of people have clinically identifiable sexual or reproductive variations.
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Learn More »This column was produced in collaboration with interACT, an organization dedicated to using innovative strategies to advocate for the human rights of children born with intersex traits. There are currently limited data and information available on the population health and overall well-being of people with intersex traits. However, recent research has found that health disparities among intersex populations are driven largely by stigmatization, prejudice, and discrimination similar to what LGBTQ+ communities experience, and that people with intersex traits report identifying as noncisgender or nonheterosexual at higher rates than people who are not intersex. For these reasons, the National Institutes of Health and The National Academies of Sciences, Engineering, and Medicine include people with intersex traits as a sexual and gender minority population in their research agendas. This column presents Center for American Progress survey data that shed new light on the experiences of intersex respondents. It also provides policy recommendations informed by these data to improve the well-being and advance the rights of people with intersex traits. “Intersex” is an umbrella term used to describe people born with sex traits that do not fit binary medical definitions of male or female sexual or reproductive anatomy. Intersex populations are born with these differences in sex traits or may develop them during childhood. Human sex development is naturally diverse, with many variations possible in genitalia, hormones, internal anatomy, and/or chromosomes. It is estimated that up to 1.7 percent of the population has an intersex trait and that approximately 0.5 percent of people have clinically identifiable sexual or reproductive variations. Medically unnecessary, nonconsensual interventions are violations of human rights Mistreatment of intersex individuals begins early in life, with intersex infants and children commonly subjected to nonconsensual, medically unnecessary interventions to alter natural variations in genital appearance or reproductive anatomy with the aim of conforming their bodies to binary sex stereotypes. These procedures on intersex infants and children, such as clitoral reductions and sterilizing gonadectomies, are often justified by discriminatory attitudes about healthy variations in sex characteristics. They have high complication rates and lifelong consequences such as infertility, reduced sexual function, and other physical and mental health impacts. These outcomes contribute to the high physical and mental health disparities that intersex populations experience. In a 2018 study, for example, 43 percent of adult intersex respondents reported their physical health as “fair” or “poor,” and 53 percent reported the same of their mental health. Similar patterns are also evident in CAP’s nationally representative 2020 survey data of LGBTQI+ adults* that show mental and physical health disparities between LGBTQ+ intersex respondents and LGBTQ+ nonintersex respondents. (see Figure 1) Figure 1 This site is protected by reCAPTCHA and the Google Privacy Policy and Terms of Service apply.
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Read More »The United Nations has found that these forced and coercive intersex surgeries on minors, frequently performed without their full, free, and informed consent, “violate rights to the security of person, right to bodily and mental integrity, freedom from torture and ill-treatment, and freedom from violence.” Increasingly, medical associations, LGBTQI+ advocates, human rights bodies, and intergovernmental organizations are asking policymakers to prevent medical professionals from engaging in these harmful practices and to postpone procedures on intersex minors until they can provide informed consent. Recommendations: The U.S. Department of Health and Human Services’ (HHS) Centers for Medicare and Medicaid Services (CMS) should issue guidance to state health officials for Medicaid and the Children’s Health Insurance Program (CHIP) on prohibiting nonconsensual, medically unnecessary surgeries on intersex youth and deferring all nonemergent interventions until patients can provide free, fully informed consent and drive decision-making. The guidance should also provide information on making the documentation of a patient’s informed consent a prerequisite for health care reimbursement for sterilizing or genital surgeries, absent an imminent risk of physical harm, and urge state health officials and providers to comply with Medicaid quality, comparability, and sterilization requirements; the Affordable Care Act (ACA); and the federal genital mutilation statute, all of which as written currently prohibit many of the procedures performed on intersex infants. HHS should also establish an education campaign for health professionals that would increase training, knowledge, and cultural competency on providing affirming, appropriate health care that respects the rights of people with intersex traits. Intersex people face high rates of discrimination and stigma According to CAP’s nationally representative 2020 survey data of LGBTQI+ adults, LGBTQ+ intersex individuals, when compared with their LGBTQ+ peers who are not intersex, experience higher rates of stigma and discrimination and high rates of engaging in behavior to avoid exposure to discriminatory treatment, such as avoiding going to the doctor. (see Figure 2) Figure 2 Sixty-nine percent of LGBTQ+ intersex respondents reported experiencing some form of discrimination in the year prior, roughly two times the rate of discrimination reported by LGBTQ+ nonintersex respondents (35 percent). Because people with intersex traits do not conform to binary sex and gender norms, they can encounter significant stigma and discrimination when accessing health care. According to the CAP survey, 88 percent of LGBTQ+ intersex respondents reported experiencing some form of discrimination from a doctor or health care provider in the year prior to CAP’s survey—including refusal of care, harsh language, or physical abuse—compared with 19 percent of LGBTQ+ nonintersex respondents. (see Figure 3) Figure 3 Thirty-four percent of LGBTQ+ intersex respondents to the CAP survey reported a household income of less than $25,000 annually, compared with 27 percent of LGBTQ+ nonintersex respondents. The high rates of economic insecurity and poverty experienced by intersex adults limit access to health care and contribute to higher rates of using social safety net programs, as shown in Figure 4. Figure 4
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Read More »When it becomes known that someone has intersex traits or they are perceived as not conforming with gender norms, intersex individuals are often subjected to discrimination and harassment in other key areas of life, such as education, employment, sports, and beyond. Forty-seven percent of LGBTQ+ intersex respondents reported that they have “made specific decisions about where to work” in order to avoid experiencing discrimination, compared with 34 percent of LGBTQ+ nonintersex respondents. Figure 5
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