From the Guidelines
Intersex individuals should receive patient-centered care with a focus on delaying medical interventions until the individual can participate in decision-making, prioritizing their physical and psychological well-being. This approach is supported by the Chicago Consensus, which provides a framework for clinicians to address the complex needs of individuals with disorders of sex differentiation (DSD) 1. The current understanding of intersex conditions emphasizes the importance of individualized care, as phenotype can vary significantly among individuals with the same condition or mutation.
Key Considerations
- Intersex conditions occur naturally in about 1.7% of the population and represent normal biological diversity.
- Management should prioritize patient-centered care, with decisions about medical interventions delayed until the individual can participate in the decision-making process when possible.
- Historically, unnecessary "normalizing" surgeries were performed on infants, but current best practice recommends avoiding irreversible interventions unless medically necessary for physical health.
- Some intersex conditions may require hormone replacement therapy later in life to support bone health and secondary sex characteristic development.
- Psychological support is crucial for both intersex individuals and their families to address identity development and potential stigma.
Multidisciplinary Care
Care for intersex individuals should be provided by multidisciplinary teams, including endocrinologists, urologists, gynecologists, psychologists, and ethics specialists, to ensure comprehensive support throughout development 1. This team-based approach can facilitate communication and decrease the negative impact of complex problems related to treatment and/or the DSD condition itself. Well-designed outcome studies are needed to provide higher quality evidence and facilitate decision-making for families and clinicians.
Molecular Diagnosis and Treatment
Improved molecular diagnosis may help predict long-term risks related to quality of life, gender dysphoria, and/or tumor, allowing for more targeted and effective treatment strategies 1. Although the lack of available high-quality evidence remains a challenge for pediatric urologists, the recommended taxonomy will continue to evolve as researchers identify the molecular basis of DSDs. Fully informed consent is essential, even if inclusion in a research protocol at a specialized center is not practical or feasible for families.
From the Research
Definition and Prevalence of Intersex
- Intersex conditions are rare congenital malformations, with over 80% being diagnosed with congenital adrenal hyperplasia (CAH) 2.
- The incidence of genital anomalies is estimated to occur in 1 in 4,500 live births 3.
- Intersex conditions can be challenging to treat because they may intrinsically perturb complex aspects of the person's gender identity, gender-role behavior, sexual orientation, sexual functioning, and psychologic adjustment 4.
Management and Treatment of Intersex
- The management of intersex conditions is complex and involves a person's gender identity, gender role behavior, sexual orientation, sexual functioning, and psychological adjustment 3.
- Hormonal therapy forms part of the treatment of every intersex condition, and can be life-saving in some cases, such as salt-wasting congenital adrenal hyperplasia 4.
- Surgical correction techniques have been developed and can provide satisfactory cosmetic and functional results 2.
- However, current data challenge the past practice of sex reassignment, and further data are necessary to formulate guidelines and recommendations fitting for the individual situation of each patient 2.
Human Rights and Intersex Care
- There is a growing international agreement to prohibit non-consensual medical interventions to intersex persons, based on human rights principles 5.
- Medical protocols for intersex care in the United States are guided by clinical wisdom and guidelines that are not legally binding, and do not meet international standards of human rights 5.
- The medical establishment in the United States enforces an outdated definition of 'sex', which can lead to non-consensual medical interventions and human rights violations 5.
Psychological Aspects of Intersex
- Intersex conditions can have a significant impact on a person's psychological adjustment, including their gender identity, gender role behavior, and sexual orientation 4, 3.
- Counseling and medical management should take into account the individual's unique situation and needs, and should prioritize their human rights and well-being 6.