interACT: Advocates for Intersex Youth, Lambda Legal, and Proskauer Rose LLP have released the nation’s first intersex-affirming hospital policy guide, offering concrete steps for medical providers to provide sensitive, non-discriminatory care to intersex patients. “Intersex” describes up to 1.7% of the population born with natural variations in chromosomes, hormones, or genitalia that transcend an outdated understanding of biological sex as a male/female binary.
The guide outlines recommended policies including the provision of affirming mental health care and patient-centered decision making to avoid non-consensual interventions such as clitoral reductions, vaginoplasties, and phalloplasties. Although genital variations typically pose no health risks, many intersex patients report significant trauma resulting from non-consensual medical interventions performed in infancy that can be safely delayed until they are old enough to participate in the decision. Read more via Lambda Legal
Introduction
”Intersex” is an umbrella term used to describe a wide range of natural variations in sex characteristics that do not seem to fit typical binary notions of male or female bodies. Between 0.05 percent and 1.7 percent of the population is born with intersex traits. These traits may be visible at birth, at puberty, or, in the case of some variations, not at all. Intersex is considered a sex and gender minority (SGM) by the National Institutes of Health (NIH) and was formally designated as a health disparity population by the NIH in 2016. Care of intersex people, particularly children, demands special attention to avoiding biases based on outdated understandings of sex and gender.
Today, medical practitioners recognize the importance of providing ethical and compassionate health care to people born with intersex traits and have launched efforts to ensure that intersex people are receiving appropriate, sensitive, and nondiscriminatory health care. The main issue raised by members of the intersex community is the continued performance of medically unnecessary genital-”normalizing” surgery on intersex infants before they are old enough to participate in the decision-making process. Rather than calling for immediate surgical intervention upon the birth of an intersex child, leading practitioners in patient-centered care recommend promptly implementing a long-term management strategy that involves a range of pediatric subspecialists, including intersex-affirming mental health providers, pediatricians, and the parent(s). Leading medical associations, recognizing that irreversible and deeply life- altering procedures can be safely delayed to both ensure best outcomes and avoid the potential ramifications of anesthesia on the developing brain, are developing policies informed by the patient community to delay harmful, medically unnecessary procedures.
To this end, hospitals today are examining their practices concerning intersex patients. Hospitals are increasingly looking to provide intersex patients and their families with knowledge- able and ethical medical and psychosocial support, encouraging honesty and openness about the treatment of intersex conditions, and diminishing the stigma and psychological trauma experienced by intersex patients and their families.
In the pages that follow, we provide a set of model hospital policies aimed at promoting best practices to ensure appropriate, ethical, and quality care is being provided to intersex patients, and to address bias and insensitivity toward intersex patients and their families. These policies concern the issues of con dentiality, nondiscrimination, gender identification, infant genital surgery and sterilization, shared decision-making, and informed consent—issues that, when mishandled, can cause significant harm to intersex patients and their families, as well as open up medical institutions to significant liability. Following each model policy, we have included an explanation of the rationale behind the policy. For reference, a glossary of key terms is included at the end of this publication.
We urge hospital administrators and legal departments to adopt these policies to ensure that their hospitals are offering health care that is appropriate, ethical, nondiscriminatory, and intersex-affirming. The policies are styled in a general format that can be tailored to the needs of individual hospitals. We encourage hospital administrators and legal departments to contact us should they require additional guidance in adapting policy language to fit their facility’s unique circumstances.
These model policies are not intended to provide legal advice, and state and local laws may require that hospitals take additional steps to protect the rights of intersex patients and their families. For this reason, hospital administrators are strongly encouraged to review these policies in consultation with their legal counsel.