PROVIDING ETHICAL AND
COMPASSIONATE HEALTH CARE TO

INTERSEXPATIENTSIN T ERSE X- AFFIRMING HOSPITAL POLICIE S

INTERSEX-AFFIRMING
HOSPITAL POLICIESINTRODUCTION”Intersex”1 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.2 These traits may
be visible at birth, at puberty, or, in the case of somevariations, not at all.3 Intersex is considered a sex andgender minority (SGM) by the National Institutes of
Health (NIH) 4 and was formally designated as a healthdisparity population by the NIH in 2016.5 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avoiding biases based on outdated understandings of sex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 ofproviding ethical and compassionate health care to people
born with intersex traits and have launched efforts to ensurethat intersex people are receiving appropriate, sensitive,

and nondiscriminatory health care. The main issue raisedby members of the intersex community is the continued
performance of medically unnecessary genital­-”normalizing”
surgery on intersex infants before they are old enough toparticipate in the decision-making process. Rather thancalling for immediate surgical intervention upon the birth of
an intersex child, leading practitioners in patient-centeredcare recommend promptly implementing a long-term
management strategy that involves a range of pediatricsubspecialists, including intersex-affirming mental healthproviders, pediatricians, and the parent(s)/guardian(s).6
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, aredeveloping policies informed by the patient community todelay harmful, medically unnecessary procedures.

1. Individuals born with intersex traits use a wide variety of terms to describe themselves and their bodies. This guide uses the term “intersex” in an attempt to be as
inclusive and nonpathologizing as possible. For more information, please refer to“A Note on Terminology,” infra at page 3.
2. United Nations for LGBT Equality, Intersex Fact Sheet, available at https://unfe.
org/system/unfe-65-Intersex_Factsheet_ENGLISH.pdf (noting that the upper estimate is similar to the number of red haired people). Because experts do not agree
on which conditions fit within the definition of intersexuality and some conditions are not evident until after a child is born, the reported percentage of people
with intersex characteristics often varies. See Anne Tamar-Mattis, Exceptions to theRule: Curing the Law’s Failure to Protect Intersex Infants, Berkeley J. of Gender, L.
& Just. 59, 63 (2006) (hereinafter “Exceptions to the Rule”).
3. Exceptions to the Rule, at 63.

4. U.S. Dep’t of Health & Hum. Servs., Nat’l Insts. of Health Sexual & Gender
Minority Res. Off.: Who We Are, available at https://dpcpsi.nih.gov/sgmro (lastreviewed Apr. 24, 2018) (“‘Sexual and gender minority’ is an umbrella term thatencompasses lesbian, gay, bisexual, and transgender populations as well as those
whose sexual orientation, gender identity and expressions, or reproductive development varies from traditional, societal, cultural, or physiological norms.”)
5. U.S. Dep’t of Health & Hum. Servs., Nat’l Inst. on Minority Health & Health
Disparities: Director’s Message (Oct. 6, 2016), available at https://www.nimhd.nih.
gov/about/directors-corner/message.html (last visited May 17, 2018).
6. See Katrina Karkazis, Anne Tamar-Mattis & Alexander A. Kon, Genital Surgery
for Disorders of Sex Development: Implementing a Shared Decision Making Approach,
23 J. of Peditric Endocrinology & Metabolism, 789-805 (2010) (hereinafter“Genital Surgery for Disorders of Sex Dev.”)

3
Studies have shown that up to 80 percent of intersex
patients have changed their care based on discomfort with
their medical providers. Solid policy that takes into consideration the needs of the community is essential to giving
intersex patients the care that they deserve. One of myurologic colleagues once said that no single specialist can
provide all the answers when it comes to intersex medicalcare, and truer words were never spoken. Quality care ofintersex patients must be truly multidisciplinary, seeing to
the needs of the whole patient and their family. And the
key to understanding this whole patient is the provision ofpeer support.”—Ilene Wong, M.D.
To this end, hospitals today are examining their practices
concerning intersex patients. Hospitals are increasingly looking
to provide intersex patients and their families with knowledgeable and ethical medical and psychosocial support, encouraging honesty and openness about the treatment of intersex
conditions, and diminishing the stigma and psychologicaltrauma 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 ofconfidentiality, nondiscrimination, gender identification, infant
genital surgery and sterilization, shared decision-making, andinformed consent—issues that, when mishandled, can causesignificant 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 therationale 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 toadopt these policies to ensure that their hospitals are offering
health care that is appropriate, ethical, nondiscriminatory, andintersex-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 tocontact 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 patientsand their families. For this reason, hospital administrators arestrongly encouraged to review these policies in consultation
with their legal counsel.

A NOTE ON TERMINOLOGYIntersex traits are sometimes described as ”Disorders of Sex
Development,” or ”DSDs”. However, a significant percentage
of individuals born with intersex traits reject this terminology
as pathologizing, and some have adopted ”Differences of Sex
Development” as an alternative meaning for the ”DSD” abbreviation; some prefer to use the name of their specific condition as
opposed to an umbrella term.7 Some individuals hold intersex

7. Johnson EK, et al., Attitudes towards “disorders of sex development” nomenclature
among affected individuals, J. Pediatric Urology (Dec. 2017).

4

INTERSEX-AFFIRMING HOSPITAL POLICIES
as an identity, while some do not. Of course, infants and children may lack adequate language to explain their identities tocaregivers.
Differing opinions by providers as to what constitutes
an intersex trait or DSD, as well as language preferences byaffected individuals and their families, necessitate dynamic
vocabularies even in diagnostically identical situations. In
addition, specific descriptors may fall in or out of favor overtime as connotations change and develop. This document
primarily uses the term ”intersex” because individuals within
the intersex community have described this term as the least
stigmatizing option, but the authors wish to recognize thatpeople born with intersex traits should have the autonomy touse whichever term, or terms, they prefer when speaking about
their own bodies and experiences. For the purposes of providing the broadest possible coverage in settings where different
language may predominate, this document uses a variety ofterms for outward-facing materials such as sample nondiscrimination policies and consent forms.
It should be noted that people unfamiliar with the words”intersex” and ”transgender” may confuse the two terms. While
there are similarities between people with intersex traits andtransgender people, the terms should not be conflated. ”Intersex” refers to inborn variations in physical bodies that do not
fit typical binary notions of male or female, whereas ”transgender” refers to people whose gender differs from their assigned
or presumed sex at birth.

CONTENTS
Policy 1: Sex Characteristics & Intersex Status
Nondiscrimination Policy.......................................... 4
Policy 2: Patients’ Bill of Rights............................................... 6
Policy 3: Medical Treatment of Intersex Children.................... 9
Policy 4: Protocols for Interaction with Intersex Patientsand Their Families................................................... 19
Glossary of Terms..................................................................... 22
Appendix A: Resources for Intersex Patients and Families...... 23

MODEL INTERSEX-AFFIRMING HOSPITAL POLICIESPOLICY 1

SEX CHARACTERISTICS & INTERSEX STATUSNONDISCRIMINATION POLICY
We recommend that hospitals include the following languagein their patient nondiscrimination policy:
POLICY:[Hospital] does not discriminate against any person on thebasis of intersex status, intersex traits, Disorders/Differencesof Sex Development, and/or atypical sex characteristics.8
Further, we recommend that hospitals communicate thisnondiscrimination policy to their employees and patients inthe following ways:

8. The presence of intersex traits may cause a provider to consider a patient to havea diagnosable DSD. However, this diagnosis does not always occur, and theprovider may note only that the patient has atypical sex characteristics. Becauseof the many variations in both self-identifications and medical classifications, andthe wide array of terms used by medical professionals and intersex individuals
to describe the intersex population, we recommend including “intersex status,intersex traits, DSD, and/or atypical sex characteristics” among the enumerated
categories in the nondiscrimination policy to provide the broadest protection
against discrimination.

5
Post

it on the hospital website and in patient waiting
areas and employee work areas;Include
it in materials routinely given to patients atadmitting/registration or at other times;
Include
it in materials routinely available for take-away inpatient waiting areas;Include
it in materials routinely given to employees atorientation; andInclude
it in periodic trainings for employees.
EXPLANATION
Instituting nondiscrimination policies that prohibit discrimination based on intersex status, intersex traits, Differences/
Disorders of Sex Development (DSDs), and/or atypical sex
characteristics is a first and necessary step toward ensuringthat intersex patients have equal access to both respectful andknowledgeable treatment and care. Section 1557 of the Patient
Protection and Affordable Care Act of 2010 (”Affordable CareAct”) prohibits sex discrimination in any hospital or healthprogram that receives federal funds,9 and in May 2016, theU.S. Department of Health & Human Services (”HHS”), Officefor Civil Rights (”OCR”), issued regulations explaining that thisprohibition extends to claims of discrimination based on ”thepresence of atypical sex characteristics and intersex traits.”10
Many state and local governments require places of ”public
accommodation” to implement policies forbidding discrimination based on sex or gender, and a growing number of jurisdictions now prohibit discrimination based on gender identity
as well.11 These prohibitions on sex, gender, and gender

9. Affordable Care Act, 42 U.S.C. § 18116(a) (2010) (“[A]n individual shall not,on the ground prohibited under title VI of the Civil Rights Act of 1964 (42U.S.C. 2000d et seq.) . . . be excluded from participation in, be denied thebenefits of, or be subjected to discrimination under, any health program or
activity, any part of which is receiving Federal financial assistance, including
credits, subsidies, or contracts of insurance . . . .”).
10. Nondiscrimination in Health Programs and Activities, 81 Fed. Reg. 31,376,
31,389 (May 18, 2016) (to be codified at 45 C.F.R. pt. 92), available at http://federalregister.gov/a/2016-11458.
11. As of December 31, 2017, nineteen states, the District of Columbia, and at
least 280 cities and counties have adopted laws that ban discrimination in public accommodations based on gender identity or expression. See LGBT Policy
Spotlight: Public Accommodations Nondiscrimination Laws (2018), Movement
A dvancement Project, available at https://www.lgbtmap.org/file/Spotlight-Public-Accommodations-FINAL.pdf. For more information on state

identity discrimination are likely to be interpreted as extending protection to intersex individuals. For example, insofar as
hospitals are considered public accommodations under the
Administrative Code of the City of New York Section 8-107(4),it is an unlawful, discriminatory practice for a hospital locatedor operating in New York City to directly or indirectly refuse,
withhold from, or deny a person any of the accommodations,advantages, facilities, services, or privileges of the hospital
based upon the person’s actual or perceived gender, including the individual’s actual or perceived sex, gender identity,
self-image, appearance, behavior or expression, whether or
not that gender identity, self-image, appearance, behavior
or expression is different from that traditionally associatedwith the legal sex assigned to the person at birth.12 The New
York City Human Rights Commission has issued enforcement
guidance specifically stating that the definition of ”gender” as
used in its nondiscrimination law encompasses discrimination
against someone for being intersex.13”The first time I saw one doctor in particular I was explaining some of my medical history, and she made me feel atpeace because she smiled and said 'well gender comes ona spectrum.' It felt so great to know I had a doctor who wasmore open to the way someone is a woman or man. She
was also a great doctor because she treated me just like anormal patient rather than someone who had something
super rare or unusual.”—Marissa Adams

and local laws prohibiting discrimination based on gender identity or gender
expression, see U.S. Jurisdictions with Laws Prohibiting Discrimination on theBasis of Gender Identity or Expression, Transgender L. & Pol’y Inst., (lastupdated Feb. 1, 2012), available at http://www.transgenderlaw.org/ndlaws/
index.htm#jurisdictions; State Nondiscrimination Laws in the U.S. Map, Nat’l
LGBTQ Task Force (last updated May 21, 2014), available at http://www.
thetaskforce.org/static_html/downloads/reports/issue_maps/non_discrimination_5_14_color_new.pdf; States and Regions Map, L ambda Legal, available at
http://www.lambdalegal.org/states-regions.
12. See N.Y. City Commission on Human Rights, Legal Enf ’t Guidance on Discrimination on the Basis of Gender Identity or Expression: Local Law No. 3 (2002);
NYC Admin. Code § 8-102(23), 3 (Revised June 28, 2016), available athttps://www1.nyc.gov/assets/cchr/downloads/pdf/publications/GenderID_
InterpretiveGuide_2015.pdf.
13. Id.

6

INTERSEX-AFFIRMING HOSPITAL POLICIES
Nondiscrimination policies are also required of accredited
hospitals under Joint Commission standard RI.01.01.01, EP
29. This Joint Commission standard provides that an accredited hospital ”respects, protects, and promotes patient rights”
and ”prohibits discrimination based on . . . sex.”14 The Joint
Commission’s LGBT Field Guide defines ”sex” as a term that”[r]efers to a person’s biological status and is typically categorized as male, female, or intersex (that is, atypical combinationsof features that usually distinguish male from female).”15
The LGBT Field Guide advises hospitals to post, disseminate,
and publicize this nondiscrimination policy on the hospital’s
website, in written material, and in packets of information
distributed to patients and employees.16”I was kicked out of a hospital as a combative patient forrefusing an unnecessary pelvic exam after growing frustrated and telling the nurse I was intersex, so some of thequestions were irrelevant. I left without help, still in intense
pain, and was then afraid to visit a doctor in the neighboring clinic because it may have been the same doctor. This
caused a domino effect of issues, and never should have
happened.”—Anonymous
Nondiscrimination provisions for intersex people are also
found outside the medical context as other institutions begin

14. See Patient-Centered Communication Standards for Hospitals, R equirement,
R ationale, R eference R eport of The Joint Commission, Issue 1 (Feb. 9,2011), available at http://www.jointcommission.org/assets/1/18/r3%20report%20issue%201%2020111.pdf.
15. See Advancing Effective Comm., Cultural Competence, & Patient- and Family-Centered Care for the Lesbian, Gay, Bisexual, and Transgender (LGBT)
Community: A Field Guide, The Joint Commission (2011), available at http://
www.jointcommission.org/lgbt/.

to recognize the necessity of such protections for the intersex
community. For example, the Washington, D.C., Departmentof Corrections issued an updated policy and procedure
document in 2014 including intersex as a protected category,along with transgender and gender-variant, for purposes of its
housing procedures.17 The Massachusetts Department of Youth
Services also prohibits discrimination on the basis of intersex
conditions in its Prohibition of Harassment and Discrimination
Against Youth.18
POLICY 2

PATIENTS’ BILL OF RIGHTS
We recommend that hospitals include the following or similar
language in their Patients’ Bill of Rights:
The following rights apply to all patients:
The patient has the right to competent, appropriate, andrespectful care in a safe setting that fosters the patient’s
comfort and dignity and is free from all forms of abuseand harassment, including abuse or harassment based onintersex status, intersex traits, Disorders/Differences of Sex
Development, and/or sex characteristics.
The patient has the right to privacy and confidentiality
during medical treatment or other rendering of care within
the [Hospital].
Medical students, residents, and other persons not directly

16. Id. at 7.
17. D.C. Dep’t of Corrections, Policy & Procedure: Gender Classification &Housing (4020.3E), effective May 1, 2014, available at https://mpdc.dc.gov/
sites/default/files/dc/sites/doc/publication/attachments/PP%204020.3E%20
Gender%20Classification%20and%20Housing.pdf.
18. Commw. of Mass., Exec. Off. of Health & Human Servs., Dep’t of Youth
Servs., Prohibition of Harassment & Discrimination Against Youth, effective July
1, 2014, available at www.mass.gov/eohhs/docs/dys/policies/030409-prohibition-youth-harassment.doc.

7
involved in the care or treatment of an intersex patient should
not be present during the patient’s case discussion, consultation, examination, or treatment except for legitimate training
purposes. Before observing or participating in an intersex
patient’s case discussion, consultation, examination, or treatment for training purposes, trainees should be counseledon the [Hospital’s] Intersex Nondiscrimination Policy and theProtocols for Interaction with Intersex Patients. In all cases,
discussion, consultation, examination, and treatment must be
conducted discreetly.
Intersex patients have the right to refuse to be examined,
observed, or treated by medical students, residents, or any
other facility staff when the primary purpose is educational orinformational rather than therapeutic, without jeopardizing
the patient’s access to medical care, including psychiatric andpsychological care.
Intersex patients have the right to access their medical
records and to be told the truth about their intersex status,intersex traits, and any related medical information, including any history of medical intervention.

Development (DSDs), and/or atypical sex characteristics. Likewise, all patients, including intersex patients, deserve to haveprivacy when discussing or consulting with their health careproviders on matters related to their health and when being
examined or receiving treatment. Privacy can be especially
important to intersex patients who may not want their intersex
status disclosed for personal or safety reasons.19

EXPLANATION
Just as hospitals are obligated to respect patients regardless ofrace, ethnicity, age, religion, creed, sex, disability, and sexual
orientation, so too must they respect a patient regardless ofintersex status, intersex traits, Differences/Disorders of Sex

Historically common, the unnecessary examination andexhibition of intersex people’s bodies as medical ”curiosities”
has been described as deeply shaming and traumatizing byintersex individuals for decades. Some state laws expressly
recognize a patient’s right to refuse to allow medical students

19. Intersex people have a compelling privacy interest in preserving the confidentiality of their intersex status and medical information relating to their intersex
traits. Although jurisprudence concerning intersex people remains limited at
the time of this publication, in cases involving transgender people and their
medical records, courts have found a compelling privacy interest in preserving
the confidentiality of a person’s transgender status and medical history. See,e.g., Powell v. Schriver, 175 F.3d 107, 111 (2d Cir. 1999) (“The excrutiatingly[sic] private and intimate nature of transsexualism, for persons who wish topreserve privacy in the matter, is really beyond debate.”); Love v. Johnson, No.
15-11834, 2015 WL 7180471 (E.D. Mich. Nov. 16, 2015) (finding that disclosure of confidential information about a person’s transgender status createsa risk of embarrassment and physical harm, and that transgender people havea fundamental right of privacy that protects them from being required to disclose their transgender status); Roberts v. Clark Cty. Sch. Dist., 312 F.R.D. 594,

”There have been occasions where I have told different
therapists or medical doctors that I have had traumatic
experiences early in my life due to different medical
exams, and the way I was informed of having PAIS [Partial
Androgen Insensitivity Syndrome]; there have been
doctors that have said I can’t have trauma from somethingthat was part of a medical recommendation. This was
so wrong to say because medical trauma and intersexspecific medical trauma is very real .... Having medical
providers invalidate my trauma was one of the worst
experiences ever.”—Marissa Adams

606 (D. Nev. Jan. 11, 2016) (observing that medical evidence of a transgenderperson’s transition is “extremely private information” and denying employer’s
motion to compel production of such medical records); Arroyo Gonzalez v.
Rossello Nevares, No. 17-1457CCC, 2018 WL 1896341, *5-7 (D.P.R. Apr. 20,2018) (ordering the issuance of new birth certificates to transgender individuals on which the gender marker has been changed to reflect “the applicant’strue gender, without ... including any information that would disclose aperson’s transgender status,” because “forced disclosure of ... transgenderstatus violates [the] constitutional right to decisional privacy.”); F.V. v. Barron,
286 F. Supp. 3d 1131, 1135 (D. Idaho Mar. 5, 2018) (concluding that rules
regarding changing the sex listed on a birth certificate “must not include therevision history as to sex or name to avoid impermissibly compelling speech
and furthering the harms” suffered by transgender people due to discrimination based on their gender identity).

8

INTERSEX-AFFIRMING HOSPITAL POLICIESor other health care staff members to be present or otherwise
involved in the patient’s case discussion, consultation, examination, or treatment.20 However, even in states that do nothave such laws, it is important that intersex patients be able torefuse to be examined or observed by health care personnel
who are not directly involved in the patient’s care.
”I was basically sexually assaulted by a nurse practitioner
who ignored my explicit direction not to attempt a full
pelvic exam. She injured me and she did whatever the hell
she wanted regardless of my very clear wishes.”—Anonymous
Of course, it is important for trainees to have interaction
with all patient groups, including intersex people, so the goal
is not to have these patients exercise their right to restrict
observation by trainees; rather, the goal is to make the environment comfortable so that the patient does not feel the need toexercise that right.
”I recently had a nurse practitioner begin asking me questions about my anatomy while in stirrups for a gynecological exam. For a solid 10 minutes I was explaining things
about my body that ”in my view” all medical professionals
should know, with my own genitalia fully exposed;
I left, as always, feeling more like a specimen than apatient. Intersex people already feel exposed in our every-

20. See, e.g., M ass. Gen. L aws ch. 111, § 70E (2018) (“Every patient ... shall be
provided ... the right ... to refuse to be examined, observed, or treated by
students or any other facility staff ... and to refuse any ... examination when
the primary purpose is educational ... rather than therapeutic.”); N.Y. Comp.
Codes, R. & R egs. tit. 10, § 405.7 (2018) (“The hospital shall afford to eachpatient the right to ... [know] the identity of any hospital personnel including
students that the hospital has authorized to participate in the patient’s treatment and the right to refuse treatment, examination and/or observation by any
personnel.”); 22 Cal. Code Regs. tit. 22, § 70707(a)(7) (2018) (“The patient
has the right to be advised as to the reason for the presence of any individual[during case discussion, consultation, examination and treatment].”); 77 Ill.

day lives once coming out as who we are in the midstof society-driven stigma and shame. The health care
community should be working to reduce, not augment,
the otherness we already feel, and should take the lead on
providing high quality care—rather than looking to intersex
people who have not gone to medical school to direct andadvocate for their best interests in a health care setting.”—Alicia W., Texas
That said, it is inappropriate for health care providers to
invite hospital staff not involved in the patient’s care to observe
the patient’s body for any reason other than legitimate training
purposes. Under no circumstances should persons not directly
involved in the patient’s care be permitted to observe or
participate in examination of the patient when the patient has
refused.
Historically, some intersex individuals have been denied
access to true and accurate information about their own bodies
and medical histories, including medical interventions that may
have been performed without their consent. The right to truth,
including the right to access one’s medical records, is enshrinedin the 2017 supplement to the Yogyakarta Principles.21 Medical
records, information, and history must be made available to thepatient to honor their right to truth as well as to enable themto make their own medical decisions with full and complete
information going forward.

A dmin. Code tit. 77, § 270.2000(o) (2018) (“Those persons not directly involved in the patient’s care must have the patient’s permission to be present.”);
L a. A dmin. Code tit. 48, § 701(A)(4) (2018) (“Those not directly involved in[the patient’s] care must have the permission of the patient to be present.”);Okla. A dmin. Code § 752:15-13-3(b)(5) (2018) (“Those not directly involvedin the patient’s care must have the permission of the patient to be present.”).
21. The Yogyakarta Principles Plus 10: Additional Principles and State Obligations on the Application of International Human Rights Law in Relation to
Sexual Orientation, Gender Identity, Gender Expression and Sex Characteristics to Complement the Yogyakarta Principles (as adopted on 10 November
2017, Geneva).

9
POLICY 3

MEDICAL TREATMENT OF INTERSEX YOUTHPURPOSE:To establish guidelines for the appropriate, safe, and ethicaltreatment of intersex youth.
For purposes of this policy, ”intersex youth” means an individual who is under 18 years of age and born with intersex
traits or sex characteristics that may be perceived as atypical(or atypical for the assigned sex).
For purposes of this policy, ”medical procedure ortreatment” includes genital surgery, gonadal surgery, or
hormonal treatment.
For the purposes of this policy, ”medically necessary
for the patient’s physical health” means a medical procedure or treatment related to an intersex trait that: (a) if not
performed, would likely endanger the life of the individual;and (b) would be considered medically necessary if recommended for a similarly situated non-intersex youth due to its
impact on the individual’s physical health.
POLICY:
Upon beginning treatment for an intersex youth, [Hospital]:
1) will promptly assign a multidisciplinary treatment team,including mental health specialists;
2) will promptly facilitate a discussion between the multidisciplinary team, including the mental health specialists, andthe parent(s) 22 of the intersex youth to explain what does
and does not pose an immediate threat to the intersex
youth’s health;3) will assign a provisional gender (without surgery) to anintersex youth who is unable to articulate their gender,
following a proper investigation and consultation with theparent(s), at which time the intersex youth can be raised inaccordance with their most likely future gender identity;4) will ensure that the intersex youth does not undergo any
medical procedure or treatment related to an intersex trait
unless:a) the medical procedure or treatment is deemed urgent
and medically necessary for the youth’s physical health,considering all of the attendant risks; ORb) the intersex youth, as determined by a mental healthprofessional:i) is capable of assenting to the procedure or treatment;ii) understands the nature and risks of, and any
available alternatives to, the procedure or treatment, including refusing or delaying the procedure
treatment; andiii) assents to the procedure or treatment.
5) will seek judicial intervention if a medical procedure ortreatment related to an intersex trait is contemplated
on behalf of the intersex youth if (a) such procedure ortreatment is not urgent and not medically necessary for thepatient’s physical health, and (b) the intersex youth does
not assent, or is not capable of assenting, to the procedureor treatment.

22. Note that our reference to “parent” throughout these guidelines includes achild’s legal guardian.

10

INTERSEX-AFFIRMING HOSPITAL POLICIESPROCEDURE:
1) Treatment TeamThe Hospital will assemble a multidisciplinary teamto provide optimal care for the intersex youth. The
composition of the team may vary based on the facility,
but typically the treatment team may include pediatricsubspecialists in endocrinology, urology, psychology/
psychiatry, gynecology, genetics, neonatology, social work,
nursing, and medical ethics, as well as the youth’s pediatrician. This team, which may also include intersex adults
and other parents of intersex children, will be responsible
for educating other health care staff in the appropriate
management of intersex youth and their families, and forcommunicating with the intersex youth and their guardians in a manner that is open, respectful, and encouragingof shared decision-making. The team should also offer toconnect the intersex patient and family members to peer
support groups.23
2) Gender Assignment
The Hospital will perform an organized, careful, andnon-emergent analysis of a variety of factors to determine
which provisional gender should be assigned to theintersex youth if they are not old enough to articulate theirgender. Gender assignment refers to the designation of agender of rearing only and does not necessitate any surgical procedures or treatments. The gender assigned should
be based on the youth’s probable adult gender identity,
which may be influenced by factors including the individual’s diagnosis; hormonal functioning; internal and external
sex characteristics; evidence of fetal central nervous system(”CNS”) exposure to androgens; and other considerations.

3) Informed Consent for Medical Procedures
and Treatment
Appropriate information must be provided and consent
must be obtained from patients before providing care.
To obtain the general and informed consent of patientsrequires providing an explanation of the nature andpurposes of the care, along with alternatives and theirbenefits, and reasonably known risks.
For an example table depicting informed consent
elements and procedures, see Appendix A.
A parent or legally appointed guardian of an intersex
youth may consent to a medically necessary treatment
or procedure on behalf of the intersex youth. Where theintersex youth is of sufficient maturity to understand thenature and risks of the proposed treatment or procedure,
the intersex youth should also provide their assent to the
proposed treatment or procedure. There is no bright line
rule as to the age at which a youth is capable of providing
assent. The physician should evaluate the intersex youth’s
capacity to make health care decisions, considering thefour following elements:a) ability to understand basic information about thetreatment or procedure;b) ability to understand and appreciate consequences;c) ability to process information rationally; andd) ability to communicate choices.
The intersex youth should participate in decision-making commensurate with their development and should
provide assent to care whenever possible.

23. See Appendix B for a list of peer support groups and resources for intersex
individuals and their families.

11
Consent requires:a) that the patient and family have met with andbeen evaluated by a treatment team (See Policy 3,
Procedure 1); andb) a member of the treatment team has provided all
information necessary to enable full, free, and informed
consent to the treatment or procedure, including:i) the nature of the proposed procedure or treatment,
including whether and to what extent the treatment
or procedure is irreversible;ii) what the procedure or treatment will aim to accomplish, including (a) the anticipated benefits of the
medical procedure or treatment, (b) whether thosebenefits are believed to be medical, psychological,
and/or social, and (c) the data (based on the mostrecent medical evidence and on the personal experiences of intersex individuals via consultation withpeer support resources) supporting and challenging
the claims that the procedure or treatment will
provide those benefits;iii) the possible risks and side effects associated withthe medical procedure or treatment, including, if
applicable, loss of potential fertility, loss of sexualfunction and/or sensation, complication rates, andpotential likelihood of future surgeries;iv) the alternatives to the medical procedure or treatment, including refusing or delaying the procedureor treatment; and24. Bob A. Rappaport, et al., Anesthetic Neurotoxicity—Clinical Implications ofAnimal Models, New. Engl. J. Med. (Feb. 26, 2015), available at http://www.
nejm.org/doi/full/10.1056/NEJMp1414786; Consensus Statement on the Useof Anesthetic & Sedative Drugs in Infants and Toddlers, SmartTots, available at
http://smarttots.org/about/consensus-statement/; Francisco J. Schneuer, et al.,v) if the procedure or treatment includes sedation,
the current state of the evidence regarding the risksof anesthesia, including that experts now suggest
avoiding non-urgent surgical procedures requiring
anesthesia in children younger than 3 years old
based on negative neurological impact.24
Prior to performing such medical procedure or treatment, [Hospital] must obtain a signed informed consent
form, which states (in addition to the more general
informed consent language that the hospital uses) that theabove information has been provided, that the patient/guardian fully understands the information, and that thepatient/guardian has no further questions.
In cases where, in the treating physician’s judgment, the(parent or legal guardian) desires a course of treatment ora procedure that the physician believes would significantly
increase the likelihood of serious harm to the intersex
youth as compared to other proposed options, the treating
physician must seek the opinion of [Hospital’s] legal counsel and bioethics committee.
EXPLANATION
1) Treatment Team
Optimal care for infants born with intersex traits requires amultidisciplinary and specialized team that includes providers
who have experience working with intersex patients and thecommunication skills necessary to connect with the patient’s
family.25 This team should include medical subspecialties andmental health professionals, as well as the intersex youth’s

The Impact of Gen. Anesthesia on Child Dev. & Sch. Performance:
A Population-Based Study (Research Report), Pediatric A nesthesia(Apr. 27, 2018).
25. Genital Surgery for Disorders of Sex Dev., at 791.

INTERSEX-AFFIRMING HOSPITAL POLICIES
primary care pediatrician.26 Where possible, reproductive endocrinologists and urologists who provide care to intersex adults
should also advise the pediatric specialists about the potential
long-term effects of pediatric treatments.27
In the past, some health care providers withheld informationfrom intersex patients and their families out of concern thatpatients and families would have difficulty accepting full disclosure about intersex traits and atypical sex characteristics. While
initial gender uncertainty can be unsettling and stressful forparents, it is now understood that honest and complete information must be provided, along with education and psychological support, to ensure that intersex patients and their families
can make fully informed decisions.
”What I wanted and needed most from my providers
was guidance to learn how to live with my condition.
My medical care was focused on disappearing it. Surgicalintervention was the only option I was offered, which inturned robbed me of the opportunity to get to know who
I really am. It’s too late now. I had ‘corrective’ surgery when
I was 15 years old. I was asked what I wanted for the firsttime when I was 47.”
—Esther Morris Leidolf, MRKH Organization
It is very important that the provider team involve theparents (and the intersex youth, when the youth is of an appropriate age) immediately and include them as much as possible
in discussions about the intersex youth’s care. The provider
team should strive to give parents full and accurate informationeven when sensitive topics, such as sexual development or
future sexual function, are at issue.29 Providers should reassure

26. Id.; see also I. A. Hughes, et al., Consensus Stmt. on Mgmt. of Intersex Disorders,Japanese Soc’y for Pediatric Endocrinology (2006), at A3.
27. Genital Surgery for Disorders of Sex Dev., at 791.
28. Peter A. Lee, et al., Global Disorders of Sex Development Update Since 2006:
Perceptions, Approach and Care, Hormone R esearch in Pediatrics (Jan. 28,
2016) (hereinafter “2016 Consensus Statement”), at 13.
29. Id.

12
parents through their words and behavior that experiencing
confusion is normal and encourage parents not to makeirreversible decisions until their emotional responses, assumptions, and biases are fully explored.30 Connecting parents to apeer support group and other resources containing educationaland reassuring information at the earliest possible time willassist with parental distress, particularly given that intersex
traits are not uncommon and families are successfully raising
healthy intersex children.31
2) Gender Assignment
Intersex infants should be assigned a preliminary gender ofrearing—just like non-intersex children—based on a review
of factors that indicate the gender with which the individualis most likely to identify. Historically, the gender assigned tointersex infants has been the gender the surgeons felt would
have the best surgical outcome.32 This approach is no longer
considered the best practice because it disregards a person’sbodily autonomy and reproductive and sexual rights, and relies
upon genital-”normalizing” surgeries that may be unwanted
and should be postponed until the patient can meaningfully
participate in decision-making. Non-consensual alteration ofgenitals that prove discordant with eventual gender identity is aform of involuntary sex assignment and can be catastrophic.
Today, it is understood that medical professionals andparents should consider numerous factors when assigning agender to an intersex infant, and that a gender can be assigned
absent any medical intervention. The appropriateness of thegender assignment will also need to be re-evaluated as theintersex child matures because, despite the best intentions of
the intersex child’s health care providers and family, the childultimately may not self-identify with the gender assigned at

30. Id. at 4-6.
31. Id. at 3-6. For a list of resources to support parents of intersex children, pleaserefer to Appendix A.
32. See Exceptions to the Rule, at 66. A “positive surgical outcome” for a male-assigned infant was thought to be a penis that can be used to urinate froma standing position and be capable of penetration at maturity. A “positive
surgical outcome” for a female-assigned infant was thought to be a vagina thatcan be penetrated by a penis.

13birth.33 The most important factor to consider is the probablegender identity with which the infant will self-identify as anadult, although as with all children this is only tentatively
predictable. In all cases, it is essential that the health care teamcommunicate effectively with the infant’s parents to help themunderstand the medical information, including the possibilityof gender uncertainty that will exist regardless of surgicalintervention, and to involve them in the gender assignment
decision-making process. The team should strive to understandthe parents’ concerns and values; however, parents experiencing anxiety and strong emotions in response to the birth oftheir intersex child need support from the mental health teammembers prior to any discussion of interventions that are not
medically necessary for the physical health of the child.34
3) Surgery and Treatment
From the 1950s to the 1990s, the standard protocol for treatingintersex infants was to perform immediate genital-”normalizing” surgery and remove gonads that were not stereotypicallyassociated with the assigned gender35 to make the child’s sex
characteristics conform more closely to that gender assignment.36 This frequently involved surgeries designed to makegenitals more ”feminine” through, for example, reducing
clitorises perceived to be too large and building or lengthening
vaginas to make them large enough to fit the average penis.37
The theory behind these surgeries was that an intersex child
who is raised from an early age in a particular gender, with

33. Katrina Karkazis & Wilma C. Rossi, Ethics for the Pediatrician: Disorders of
Sex Dev.: Optimizing Care, 31 Pediatrics in R eview; e82 (Nov. 2010), at e83(hereinafter “Disorders of Sex Dev.: Optimizing Care” ).
34. Genital Surgery for Disorders of Sex Dev., at 792-793.
35. Exceptions to the Rule, at 60; Disorders of Sex Dev.: Optimizing Care, at e82.
36. Alice Domurat Dreger, “Ambiguous Sex” – or Ambivalent Medicine?, 28 H astings Ctr . R ep. 24 (1998), available at http://www.isna.org/articles/ambivalent_medicine (hereinafter “Ambiguous Sex” ).
37. Id.
38. Exceptions to the Rule, at 64.
39. Disorders of Sex Dev.: Optimizing Care, at e84; Elena Bennecke, et al., Subjective Need for Psychological Support (PsySupp) in Parents of Children & Adolescents With Disorders of Sex Dev. (DSD), Eur. J. of Pediatrics (A pr. 2015).
40. Exceptions to the Rule, at 66-67; C.L. Minto, et al., The Effect of Clitoral Surgery on Sexual Outcome in Individuals Who Have Intersex Conditions With Ambiguous Genitalia: a Cross-Sectional Study, L ancet (2003); N.S. Crouch, et al.,surgically imposed normative-looking genitals to ”match” thatgender, will develop the desired gender identity (regardlessof the child’s chromosomes or prenatal hormone exposure)and have positive psychosocial outcomes. Many doctors also
thought that genital-”normalizing” surgeries would help
parents bond with their intersex child and would preventthe child from suffering teasing and rejection from peers
and future partners.38 Satisfactory evidence to support these
conclusions is lacking.
While both doctors and parents had good intentions inchoosing genital-”normalizing” surgeries for intersex infants,
is there no evidence to support the belief that altering atypical sex characteristics will reduce parental distress or ease
the intersex child’s adjustment.39 Early genital-”normalizing”
surgeries remove potentially orgasmic tissue, interfere withnerves that are poorly understood and delicate, and leave scartissue that can reduce genital sensation and sexualfunction.40 Moreover, the process of altering an intersex child’s
genitals usually involves multiple invasive and painful surgeries that often continue into puberty41 and can result in loss of
fertility or potential fertility.42 Most worrisome, a recent population-based study of the impact of anesthesia on the developing
brains of several hundred thousand children showed impaired
developmental outcomes as a result of anesthesia, which
increases with repeated procedures.43 Finally, the overwhelming majority of intersex people who have spoken publicly about

Genital sensation after feminizing genitoplasty for congenital adrenal hyperplasia:
a pilot study, 93 BJU Int’l., 135-8 (Aug. 15, 2003).
41. A. Nordenskjold, et al., Type of mutation and surgical procedure affect long-term
quality of life for women with congenital adrenal hyperplasia, 93 Clin Endocrinol M etab, 380-386 (2008); Ritta Fagerholm, Sexual Function and Attitudes
Toward Surgery After Feminizing Genitoplasty, 185 J. of Urology, 1900-1904(May 2011).
42. Juan E. Mendez, Report of the Special Rapporteur on Torture & Other Cruel,
Inhuman or Degrading Treatment or Punishment, Human Rights Council,
U.N. Doc. A/HRC/22/53 (Feb. 1, 2013); World Health Org., Sexual Health,
Human Rights and the Law 26 (2015), available at http://apps.who.int/iris/
bitstream/10665/175556/1/9789241564984_eng.pdf.
43. Francisco J. Schneuer, et al., The Impact of Gen. Anesthesia on Child Dev.
& Sch. Performance: A Population-Based Study (Research Report), PediatricA nesthesia (Apr. 27, 2018).

INTERSEX-AFFIRMING HOSPITAL POLICIES
cosmetic genital-”normalizing” surgery on intersex children
oppose the practice.44
In addition to the physical harms of genital-”normalizing”
surgery, there are significant psychosocial harms, including
feelings of shame and humiliation arising from the constantexamination of the intersex child’s genitals, and feelingsof anger and depression when irreversible surgeries havedeprived the individual of fertility or sexual pleasure or haveresulted in altered anatomy that does not match the genderwith which the individual ultimately self-identifies.45 Genital-”normalizing” surgeries are also problematic because they
are often based on the heteronormative assumption thatthe intersex child will grow up to be heterosexual and desire
penile-vaginal intercourse46 and on gender stereotypes that
presume males would prioritize penis size over reproductive
capabilities and females would prioritize penetrative sex overgenital sensation.47”Informed consent in intersex surgeries is often discussed
in reference to identity, decisions that were made about anintersex person’s body without their consent that ultimately
conflicted with that person’s identity and caused strife.
I am lucky to have avoided misgendering, but becauseof a decision made without my consent, I am still forced
to rely on hormone therapy—which can be expensive anddifficult to access. I’ve had to make certain life decisions

44. Human Rights Watch, “I Want to be Like Nature Made Me”: Medically Unnecessary Surgeries on Intersex Children in the US (2017), available at https://www.
hrw.org/report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us.
45. Id. at 10.
46. Sylvan Fraser, Constructing the Female Body: Using Female Genital Mutilation
Law to Address Genital-Normalizing Surgery on Intersex Children in the UnitedStates, 9 Int’l J. of Human R ights in Healthcare (2016), at 64 (hereinafter“Constructing the Female Body” ).
47. Julie A. Greenberg, Health Care Issues Affecting People with an Intersex Condition or DSD: Sex or Disability Discrimination?, 45 L oy. L.A. L. R ev. 849

14solely based on ensuring I’d be able to receive medicine
that I wouldn’t need otherwise. Living in the South, accessto women’s health care is under constant threat, and often
those issues are exacerbated for intersex people who needbirth control not for contraception but to maintain normal
bodily functions.”—Alicia W., Texas
Because the majority of infants born with ”genital ambiguity” are otherwise healthy48 and intersex traits themselves
rarely pose a medical problem requiring urgent surgical treatment,49 the majority of early surgeries performed on intersex
infants’ genitals are purely cosmetic and therefore medicallyunnecessary. There are very limited circumstances in which an
immediate genital surgery is medically necessary to address
an imminent threat to the intersex infant’s health. For example, genital surgery is medically necessary to create a urinary
opening in a child born without an opening for urine to exit the
body.50 More commonly, intersex children may need medical
treatment unrelated to their genitalia. For example, a sub-typeof congenital adrenal hyperplasia (CAH) causes a dangerous
salt-wasting condition that must be treated to protect thechild’s life.51 However, even in this instance, early genital
surgery is not necessary to address salt-wasting, and the child’s
atypical sex characteristics do not themselves pose a threat tothe child’s health.52(Spring 2012), at 858-60.
48. Diane K. Wherrett, Approach to the Infant with a Suspected Disorder of Sex
Dev., 62 Pediatr Clin N A m 983 (2015), at 985 (hereinafter “Approach to the
Infant” ).
49. Laura Hermer, Paradigms Revised: Intersex Children, Bioethics, & the Law, 11
A nnals Health L. 195, 197 (2002).
50. Genital Surgery for Disorders of Sex Dev., at 789.
51. Approach to the Infant, at 985.
52. Constructing the Female Body, at 63; Dreger, “Ambiguous Sex”, available at
http://www.isna.org/articles/ambivalent_medicine.

15
Even when a surgery related to an intersex trait may be
medically indicated, if the surgery can safely be delayed, thehospital should strive to postpone the surgery until the intersex
child is old enough to participate in the decision. For example,
early gonadal surgery is unwarranted when the malignancy risk
is unlikely to manifest before puberty.53 Postponing medical
procedures relating to intersex traits preserves the intersex
child’s options for the future It allows for consideration of theintersex child’s expressed gender identity, accommodates
potential fertility preservation,54 and upholds the intersex
individual’s right to meaningfully participate in the decision
whether or not to elect an irreversible medical treatment.55

We advise hospitals not to perform medically unnecessary
procedures relating to intersex traits on intersex infants absent
a court order and to postpone all procedures relating to such
traits if there is no imminent threat to the intersex child’s

physical health, not only for ethical reasons but also to avoid
serious legal consequences. Legal authorities have observedthat an intersex child’s reproductive rights can be violated
by surgeries that impact reproductive capacity, such as theremoval of gonads in infants with complete androgen insensitivity syndrome. Legal actions have been brought challenging
genital surgery and gonadectomy without patient consent as abreach of fundamental reproductive rights and bodily autonomy in several jurisdictions.56 To reduce the risk of liability,
hospitals should not perform a surgery that could sterilize anintersex child unless the child’s parents have obtained a court
order approving the surgery.57 In addition, U.S. federal law58
and most state statutes59 prohibiting female genital mutilation
make no exception for clitoral cutting that occurs when thevictim happens to have intersex traits. Hospitals should not
perform clitoral reduction surgeries on intersex infants because
cutting of the clitoris for social reasons fits the definition of
female genital mutilation and is illegal.60
In recent years, medical, governmental, and human rights
organizations have increasingly emphasized the need topreserve intersex patients’ autonomy61 and denounced thepractice of cosmetic genital surgeries on intersex infants. In
2015, the European Union Agency for Fundamental Rights
advised member states to avoid non-consensual gender”normalizing” medical treatments on intersex people,
and Malta became the first nation to put a moratorium on

53. Disorders of Sex Dev.: Optimizing Care, at e84 (deferring orchidectomy ininstances of complete androgen insensitivity syndrome (“CAIS”) until theintersex individual can participate in the decision is recommended because therisk of tumor formation is low and malignancies have never been seen before
age 14 years); Exceptions to the Rule, at 67 n.58 (undescended testicles may beat increased risk of becoming cancerous but the risk is unlikely to manifest
before puberty and therefore the decision should be delayed until the intersex
child can participate); 2016 Consensus Statement, at 16 (intersex patients “havean increased risk of developing cancers of the germ cell lineage, malignant
germ cell tumors or germ cell cancer . . . Although precursor legions areformed during embryonal or early post-partum development, the progression
to invasive growth only occurs during or after puberty, often cited as a reason
to delay surgery.”).
54. Lisa Campo-Engelstein, et al., The Ethics of Fertility Preservation for PediatricPatients With Differences (Disorders) of Sex Development, 1 J. of the Endocrine Soc’y (June 2017).
55. 2016 Consensus Statement, at 19; Exceptions to the Rule, at 75.
56. 2016 Consensus Statement, at 20 (noting litigation in Colombia, Australia,

Kenya, and the United States).
57. Greenberg, supra note 46, at 872-73.
58. 18 U.S.C. § 116 (2013).
59. See e.g., A riz. R ev. Stat. § 13-1214 (2018); C al. Penal Code § 273.4(b)(2018); Colo. R ev. Stat. § 18-6-401(b) (2018); Del. Code A nn. tit. 11,§ 780 (2018); Fla. Stat. A nn. § 794.08 (2018); Ga. Code A nn. § 16-5-27(2018); 720 Ill. Comp. Stat. § 5/12-34 (2018); K an. Stat. A nn. § 21-5431(2018); LSA-R.S. 14:43.4 (2018); Md. Code A nn., Health-Gen. § 20-601(2018), § 20-602 (2018); Mich. Comp. L aws § 750.136 (2018); Minn. Stat.
§ 609.2245 (2018); Mo. R ev. Stat. § 568.065 (2017); Nev. R ev. Stat. A nn.
§ 200.5083 (2017); N.J. R ev. Stat. § 2C:24-10 (2018); N.Y. Penal L aw §130.85 (2018); Or. R ev. Stat. § 163.207 (2018); 11 R.I. Gen. L aws § 11-52(c)(3) (2018); S.D. Codified L aws § 22-18-37, et seq. (2018); Tenn. Code
A nn. § 39-13-110 (2018); Tex. Health & Safety Code A nn. § 167.001(2017); Va. Code A nn. § 18.2-51.7 (2017); W. Va. Code A nn. § 61-8D-3A(2018).
60. Constructing the Female Body, at 63.
61. 2016 Consensus Statement, at 20.

”Everything that doctors did ‘for me,’ they did for someone
else. My feminizing hormones and surgeries were, in mydoctor's words, to ‘develop for my future husband.’ Thosewords ring in my ears every day. Now, hips and breasts
feel pasted onto me as an afterthought, reminders that,as a female-assumed nonbinary intersex person, my bodybelongs to the male gaze. Medicine enforced that.”—Hann Lindahl, California

INTERSEX-AFFIRMING HOSPITAL POLICIES

16

non-vital childhood genital surgery.62 The United Nations
has condemned the practice of subjecting intersex children
to medically unnecessary procedures for the purposeof ”normalizing” their genitals, finding that these oftenirreversible surgeries violate the intersex child’s rights tophysical integrity and to be free from torture.63 In 2017,
three former U.S. Surgeons General published an article inwhich they concluded that ”[c]osmetic genitoplasty should be
deferred until children are old enough to voice their own view
about whether to undergo the surgery. Those whose oath orconscience says ‘do no harm’ should heed the simple fact that,to date, research does not support the practice of cosmetic
infant genitoplasty.”64
Physicians for Human Rights has similarly ”call[ed] foran end to all medically unnecessary surgical procedures onintersex children before they are able to give meaningfulconsent to such surgeries.”65 In 2016, the American Medical
Association Board of Trustees issued a report recognizingthat ”DSD communities and a growing number of health-care
professionals have condemned . . . genital ‘normalizing,’
arguing that except in the rare cases in which DSD presents
as life-threatening anomalies, genital modification should bepostponed until the patient can meaningfully participate indecision making” and recommending adoption of a resolution supporting treatment that, ”except when life-threatening
circumstances require emergency intervention, defers medicalor surgical intervention until the child is able to participate indecision making.”66 Also in 2016, GLMA: Health Professionals
Advancing LGBT Equality became the first medical association
to take an official position recommending ”delay of any surgicalinterventions and gender-related medical interventions for
DSD that are not deemed medically necessary until the patient
can provide informed consent/assent to these interventions.”67
In 2018, the Michigan Medical Society proposed a resolution
recommending ”[t]hat our American Medical Association
oppose the assignment of gender binary sex to infants withdifferences in sex development through surgical intervention
outside of the necessity of physical functioning for an infant
and believes children should have meaningful input into any
gender assignment surgery.”68

62. Lih-Mei Liao, Dan Wood, & Sarah M. Creighton, Parental Choice on
Normalising Cosmetic Genital Surgery: Between a Rock and a Hard Place, BMJ(Sept. 28, 2015), at 2.
63. United Nations, Office of the High Commission for Human Rights, Intersex
Fact Sheet, available at https://www.unfe.org/system/unfe-65-Intersex_Factsheet_ENGLISH.pdf.
64. M. Joycelyn Elders, David Satcher & Richard Carmona, Re-Thinking Genital
Surgeries on Intersex Infants, Palm Center: Blueprints for Sound Public Policy(June 2017), available at https://www.palmcenter.org/publication/re-thinking-genital-surgeries-intersex-infants/.
65. Statement of Homer Venters, Unnecessary Surgery on Intersex Children Must
Stop, Physicians for Human Rights (Oct. 2017), available at http://physiciansforhumanrights.org/library/statements/end.html.
66. Patrice M. Harris, Supporting Autonomy of Patients with Differences of Sex
Development (DSD), Report of the Bd. of Trustees (7-I-16), Am. Med.
Ass’n. Reference Committee on Amendments to Constitution and Bylaws,(2016), available at https://assets.ama-assn.org/sub/meeting/documents/
i16-bot-07.pdf.

67. Jeremy Toler, Medical and Surgical Intervention of Patients with Differences in
Sex Development, GLMA, (approved Oct. 3, 2016), available at https://interactadvocates.org/wp-content/uploads/2016/11/11-2-16-GLMA-Position-Medical-Surgical-Intervention-of-Patients-with-DSD.pdf.
68. Opposing Surgical Sex Assignment of Infants with Differences of Sex Development,
Draft Resolution 013 (A-18), Am. Med. Ass’n House of Delegates (May 2018),
available at https://www.ama-assn.org/sites/default/files/media-browser/public/hod/a18-013.pdf.
69. AAP Committee on Bioethics, Policy Statement: Informed Consent in Decision-Making in Pediatric Practice, 138 Pediatrics (Aug. 2016) (hereinafter,“2016 AAP Policy Statement” ).
70. Samantha S. Uslan, What Parents Don’t Know: Informed Consent, Marriage,
and Genital-Normalizing Surgery on Intersex Children, 85 Ind. L.J. 301 (2010),
at 321.
71. Jennifer L. Rosato, Using Bioethics Discourse to Determine when Parents Should
Make Health Care Decisions for Their Children: Is Deference Justified?, 73
Temp. L. R ev. 1 (2000), at 5-6; Uslan, supra note 69, at 309-310.

4) Informed Consent
Those who receive health care have the right to bodily autonomy, which is why informed consent is an essential part ofhealth care practice. The law has evolved to require full disclosure to the patient of the facts necessary to form the basis of areasonable, informed consent. In a pediatric setting, however,patients may lack the ability to act independently or may have
limited or no capacity for medical decision-making.69 Numerous physicians and scholars have argued for a higher level of
informed consent to better protect intersex children and to
make sure parents have all of the relevant information necessary to make an informed decision.70
Parents are generally afforded a great deal of deferencein making decisions for their children, including the ability to17make medical decisions for their minor children.71
Obtaining informed permission from parents or legal
guardians before medical interventions on pediatric patientshas become the standard, with the assent of the child wheneverappropriate.72 According to the 2016 Policy Statement from theAmerican Academy of Pediatrics (”AAP”) on informed consent
in pediatric practice, even if the patient is a child and therefore
not completely autonomous in making medical decisions, it isstill the physician’s duty to give the patient the opportunity toparticipate in the process in a manner appropriate to the child’s
capacity: ”Nevertheless, the goals of the informed consent
process (protecting and promoting health-related interestsand incorporating the patient and/or family in the healthcare decision-making) are the same in the pediatric and adult
population and are grounded by the same ethical principles ofbeneficence, justice, and respect for autonomy.”73
There is no bright line demarking when a minor becomes”mature” enough to independently satisfy the decision-making
criteria for informed consent or refusal.74 The AAP recommends
that minors participate in decision-making commensuratewith development and that parents and physicians should
not exclude children and adolescents from decision-making
without persuasive reasons. Adolescent decision-making isdependent on factors such as cognitive ability, maturity of
judgment, and moral authority. The 2016 AAP Policy provides
that dissent by the pediatric patient should carry considerable
weight when the proposed intervention is not essential and/or
can be deferred without substantial risk.75
When interacting with intersex children, physicians should
use developmentally appropriate language during discussions,and information should be provided in a manner that respects

the cognitive abilities of the child or adolescent. Developmental
assessment by trained providers can determine whether there
is adequate capacity for understanding and decision-making.
Only patients who have appropriate decisional capacity cangive their informed consent.
It is important to note that parental informed permission
for children is not absolute and is limited to the extent thatthe parent’s decision raises concerns as to whether the parent
is acting in the best interests of the child. Conflicts of thissort are readily visible when the proposed medical procedure
implicates the child’s fundamental rights. As the 2016 AAP
Policy Statement acknowledges, although parents generally
are better situated to understand the unique needs of theirchildren and make appropriate, caring decisions, ”[t]his is not
an absolute legal right, however, because the state also has asocietal interest in protecting the child from harm (the doctrineof parens patriae) and can challenge parental authority in situations in which a minor is put at significant risk of serious harmor neglect.”76
Parental rights can be tempered by the state’s right to act
as parens patriae to protect the well-being of children.77 The
state has a ”quasi-sovereign interest in the health and well-being—both physical and economic—of its residents in general.”78
While parents retain the fundamental right to make decisions
regarding the ”care, custody, and control of their children,”79 thestate can prevent parents from choosing medical treatments
it has found to be contrary to the children’s best interests.80
Parental decision-making has been limited specifically in thecontext of sterilization procedures for children, as the right toprocreation is a fundamental right and sterilization procedures
have the potential for extreme abuse.81 In determining whether

72. 2016 AAP Policy Statement.
73. Id. at 2.
74. Id. at 4.
75. Id.
76. Id. at 3.
77. Anne Puluka, Parent Versus State: Protecting Intersex Children from Cosmetic
Genital Surgery, 2015 Mich. St. L. R ev. 2095 (2015), at 2115.
78. Id. at 2118.
79. Troxel v. Granville, 530 U.S. 57, 66 (2000) (plurality opinion).
80. For example, cases in New Jersey and California have held that states canconstitutionally outlaw care they find unreasonably harmful based on existing
research and professional opinions, even if a portion of the professionals in

the field do support the form of care. See e.g., Pickup v. Brown, 740 F.3d 1208
(9th Cir. 2014) (holding that where a state statute prohibited parents fromrequiring children to undergo sexual orientation change efforts, or conversion
therapy, the fundamental rights of parents do not include the right to choose a
specific type of provider for a specific medical or mental health treatment thatthe state has reasonably deemed harmful); Doe v. Christie, 33 F. Supp. 3d 518(D.N.J. 2014) (holding that where the New Jersey legislature had passed a ban
on conversion therapy, parents did not have a constitutional right to obtain aparticular type of medical treatment or to be treated by a specific health careprovider).
81. Skinner v. State of Oklahoma ex. rel. Williamson, 316 U.S. 535, 541 (1942).

INTERSEX-AFFIRMING HOSPITAL POLICIES

18

to allow the state to intervene in family decision-making,courts engage in a careful balancing process, considering theseriousness of the child’s medical condition, consequences oftreatment, and the maturity of the child, with the primary focus
being on the best interests of the child.82
Parental decision-making regarding genital surgeries may
also be limited by the state’s interest in protecting the intersex
child’s privacy rights, particularly those regarding reproduction
and sexual health. There are strong arguments that genital
surgery in infancy implicates the child’s substantive due
process right to privacy by depriving the child of the opportunity to define their gender.83 The right to privacy is derived fromthe Substantive Due Process Clause of the Fourteenth Amendment,84 which protects rights that are deemed ”fundamental.”
The Supreme Court has invoked the privacy right in numerous
cases involving sexual relationships, family relationships, thedoctor-patient relationship, and medical decision-making.85
The Supreme Court has also confirmed that minors are entitledto a degree of privacy in making important medical decisions
that will have lasting effects on their lives and sense of self.86
In Carey v. Population Services International, the Supreme Court

explicitly stated that the right to privacy protects ”important
decisions,” which are those that have a long-term meaningful
impact on the individual’s life, regardless of the fact that thedecision was made during infancy.87 Further, in Bellotti v. Baird,
the Supreme Court found that the child’s right to privacy inmaking a decision must be prioritized over the parents’ interestin remaining informed and involved in their child’s decisions.88
These privacy rights are at stake when decisions are madeabout genital surgeries for intersex children because these children must live with the results of highly invasive, irreversible
surgeries for their entire lives, despite having been deprived of
the opportunity to grant informed consent to the procedures. In
addition, their long-term cognitive function may be damagedby the sedation required for an unnecessary surgery.89
In sum, parental decision-making should be understoodas the parents’ responsibility to support the interests of theirchild rather than their right to impose their own choices on
their child. The AAP Policy provides: ”By moving the conversation from parental rights towards parental responsibility,
clinicians may help families minimize conflicts encountered in
the course of more serious and difficult medical decision-mak-82. Anne Puluka, Parent Versus State: Protecting Intersex Children from Cosmetic
Genital Surgery, 2015 Mich. St. L. Rev. 2095 (2015), at 2127.
83. Id. at 2128.
84. The clause prohibits states from “depriv[ing] any person of life, liberty, or
property, without due process of law.” U.S. Const. amend. XIV, §1.
85. Lawrence v. Texas, 539 U.S. 558, 578 (2003) (holding that the state cannot
criminalize private, consensual sexual conduct); Zablocki v. Redhail, 434 U.S.
374, 386 (1978) (stating that the right to privacy includes the right to define
an intimate relationship through marriage); Roe v. Wade, 410 U.S. 113, 153(1973) (holding that the right to privacy encompasses the right to decide
whether to reproduce); Eisenstadt v. Baird, 405 U.S. 438, 453 (1972) (“If theright of privacy means anything, it is the right of the individual, married or
single, to be free from unwarranted governmental intrusion into matters so
fundamentally affecting a person as the decision whether to bear or beget achild.”).

86. See Planned Parenthood of Se. Pa. v. Casey, 505 U.S. 833, 899 (1992) (plurality
opinion) (holding that one parent veto power is constitutional as long as thestate provided judicial bypass for minors who do not wish to inform theirparents); Hodgson v. Minnesota, 497 U.S. 417, 423 (1990) (holding that states
may not require a minor to notify both parents before seeking an abortion,even when judicial bypass is another available option); Carey v. Population
Servs. Int’ l, 431 U.S. 678, 694 (1977) (holding that the state cannot impose
on a minor’s right to privacy by making it nearly impossible for the minor to
obtain contraception).
87. Carey v. Population Servs. Int’ l, 431 U.S. 678, 684-86 (1977).
88. Bellotti v. Baird, 443 U.S. 622, 642 (1979).
89. Francisco J. Schneuer, et al., The Impact of Gen. Anesthesia on Child Dev.
& Sch. Performance: A Population-Based Study (Research Report), PediatricA nesthesia (Apr. 27, 2018).
90. 2016 AAP Policy Statement, at 3.

19ing.”90 Clinicians must balance the need to work collaboratively
with parents and families and the importance of the families’autonomy with the need to protect children from serious andimminent harm.91 States may intervene where the parental
decision places the child at risk of serious harm or would cause
the loss or deprivation of basic needs or freedoms.
POLICY 4

PROTOCOLS FOR INTERACTION WITH INTERSEX PATIENTSAND THEIR FAMILIESPURPOSE:To ensure that hospital staff members interact with intersex
patients with professionalism, courtesy, and respect.
POLICY:
When an intersex patient presents for health care, they
will be addressed and referred to on the basis of theirself-identified gender, using their pronouns and namein use, regardless of the patient’s appearance, surgicalhistory, legal name, or sex assigned at birth. If the patient’s
family members suggest identifiers differing from thosewith which the patient self-identifies, the patient’s identity
should be honored. If the patient is unable to communicate due to age or incapacity, staff will honor the name andpronoun recommendations of the patient’s family.
Hospital staff members will not use language or tonethat a reasonable person would consider to demean, question, or invalidate a patient’s actual or perceived gender

91. Id.
92. In addition to the “legal name” field, admitting/registration forms should
include an optional field for a patient’s “Name in Use.” [Hospital] can use an
existing “nickname,” “alias” or similar field to record the patient’s name in use
and an optional field to record patient’s pronouns. The system should include
a readily visible notification or alert flag that appears on the viewer’s screen andindicates the patient’s pronouns and name in use. For more information on

identity or expression.
Hospital staff members will not ask questions or makestatements about an intersex person’s genitalia, otherphysical characteristics, or surgical status except for professional reasons that can be clearly articulated. Information
about a patient’s intersex traits, DSDs, atypical sex characteristics, or any intersex-related care that the patient isseeking and/or has obtained is sensitive medical information, and hospital staff members will treat it as such.
PROCEDURE:
An intersex patient’s pronouns should be determined asfollows:
1. If the patient’s admitting/registration record contains
the ‘Name in Use’ and pronouns that were self-identified
by the patient upon admission to the hospital, the hospital
staff member should refer to the patient using that nameand pronoun.92
2. If the patient’s gender presentation does not clearly
indicate the patient’s gender identity, the hospital staff
member should discreetly and politely ask the patient forthe pronouns the patient uses.
A patient should not be asked about intersex status, intersex traits, atypical sex characteristics, DSDs, or any intersex-related care unless such information is directly relevantto the patient’s care. If it is necessary to the patient’s care
for a health care provider to inquire about such information, the provider should explain to the patient: (1) why

recording a patient’s name, gender, and pronouns in admitting/registration records, see Creating Equal Access to Quality Health Care for Transgender Patients:
Transgender Affirming Hospital Policies, Lambda Legal, Human Rights Campaign, Hogan Lovells, N.Y. City Bar (revised May 2016), at 13-16, available
at http://www.lambdalegal.org/sites/default/files/publications/downloads/
hospital-policies-2016_5-26-16.pdf.

INTERSEX-AFFIRMING HOSPITAL POLICIES
the requested information is relevant to the patient’scare, (2) that the information will be kept confidential but
some disclosures of the information may be permitted
or required, and (3) that the patient should consult thehospital’s HIPAA policy for details concerning permitted
disclosures of patient information.
EXPLANATION
Refusing to refer to an intersex person by the person’s
pronouns and name in use,93 or asking inappropriate questions
about genitalia in an effort to determine the person’s ”true”
gender, is a form of harassment and may violate anti-discrimination provisions already in place.94 Such behavior violates
an intersex patient’s rights to privacy and dignity.95 Verbal
harassment can rise to the level of sexual harassment when astaff member asks inappropriate questions about the patient’s
genital status (e.g., ”What’s between your legs?” ”Have you had
surgery?”) or sexual behavior or makes inappropriate assertions about the patient’s genitalia (e.g., ”As long as you havea penis, I am going to call you by a male name”). Fortunately,
only minimal effort is required to refrain from using this kind ofharassing and disrespectful language.

93. “Name in use” refers to the name by which a person wants to and should be
addressed, even though it may differ from the name appearing on the person’s
legal identity documents or the name assigned to the person at birth.
94. See Lusardi v. McHugh, Appeal No. 0120133395, 2015 WL 1607756(E.E.O.C. Apr. 1, 2015) (finding that misgendering a transgender woman

20”Bias, prejudice, and cultural stereotypes are in the examination room as with every other space. It is not acceptableto hear ”Thank God, you’'re pretty,” ”This will help you
become [insert gender],” ”You fulfill three out of five criteria
for your [presenting gender],” or ”You should keep thisto yourself.” Regardless of your interest in intersex traits,
please keep your questions professional and considerate.
Ask yourself, ”Does asking this question help me treat thispatient?” ”Would this question make me feel uncomfortable?” When in doubt, think, ”empathy.”—Suz Temko
Intersex patients may be reluctant to share information
regarding their intersex status, intersex traits, atypical sex characteristics, or intersex-related care because they fear discrimination or inappropriate treatment, even when this information
may be integral to the patient’s care. To facilitate rapport
between health care providers and intersex patients, when aprovider asks a patient about intersex status, intersex traits,
atypical sex characteristics or intersex-related care, the provider
should explain proactively to the patient why the information
sought is relevant to the patient’s care and that such informa-by repeatedly referring to her by her former male name and male pronouns
constituted actionable harassment under Title VII of the Civil Rights Act of1964).
95. See supra at note 20.

21tion will be treated confidentially in accordance with and to theextent required by law.
”My only positive medical experience has been at LyonMartin clinic, a lesbian- and queer-focused foundationin San Francisco. Even there, few staff had intersex
experience, but everyone was so respectful and dedicatedto consent , that I felt immediately safe. Forms were
carefully designed for gender- and sex-inclusive language,
staff asked before every touch, and the walls were colorfuland had portraits of LGBT leaders. Staff made notes about
intersex medical trauma, and referenced them across visits
and providers—I was always remembered and prioritized.”—Hann Lindahl, California
Before the patient discloses information in response to
the provider’s inquiry, the patient should be fully informed ofany mandatory or permissive disclosures of the information inaccordance with the hospital’s standard notice of privacy practices. The inappropriate disclosure of intersex status, intersex
traits, atypical sex characteristics, or intersex-related medi-

96. Id.
97. Under the Privacy Rule, “protected health information” is all “individually
identifiable health information” held or transmitted by a covered entity or
its business associates, in any form or media. This includes all information,
including demographic data, that relates to (i) the individual’s past, present, or
future physical or mental health or condition; (ii) the provision of health carecal history may result in discrimination against the intersex
patient, so the intersex patient is entitled to make an informed
decision about what information to share with the provider.96”I had one endocrinologist I went to see when I experiencing intimacy issues in a particularly vulnerable area of mybody. Despite the doctor not having in-depth knowledgeof intersex people, she treated me with kindness, empathy,
and respect.”—Suz Temko
Note also that information about a patient’s intersex status,intersex traits, atypical sex characteristics, or intersex-related
care that can identify a patient or can be used with otheravailable information to identify a patient constitutes protected
health information under HIPAA. As a result, inappropriate
disclosure of this information may be a violation of the Privacy
Rule97 and, other than in the context of providing treatment
services (and limited other situations), is subject to the ”minimum necessary” standard.98

to the individual; or (iii) the past, present, or future payment for the provisionof health care to the individual; and that identifies the individual or for which
there is a reasonable basis to believe it can be used to identify the individual.
45 C.F.R. § 160.103.
98. Id.

22

INTERSEX-AFFIRMING HOSPITAL POLICIESGLOSSARY OF TERMS
Differences of Sex Development (”DSD”): A medical
term used to refer to conditions that cause intersex traits,
sometimes styled as ”Disorders of Sex Development.”
DSD is regarded as stigmatizing by some intersex people
although it is often the most recognizable term for use incommunications with medical providers.

Gonadectomy: Refers to the removal of gonadal tissue,
a gonad being a gland that produces sex hormones(estrogen and testosterone) and gametes (eggs, sperm,
or neither). Gonad is a generic term that encompasses
ovaries, testes, ovotestes, and undifferentiated streak
gonads.

Gender expression: The way a person expresses genderthrough dress, grooming habits, mannerisms, and othercharacteristics.

Hermaphrodite: A term once commonly used to referto individuals with intersex traits. It is now consideredpejorative and outdated, although a small number ofintersex people have reclaimed the term. Do not use thisterm apart from someone’s own self-description.

Gender identity: A person’s internal sense of being
female, male, both, or something other than female or
male. Gender does not necessarily correspond to the sex
assigned or presumed at birth.
Genital-”normalizing” surgery: A procedure thatalters the genitals of children born with atypical sex
characteristics/intersex traits, usually performed under
the age of 2, with the goal of making the child’s genitals
appear more typical of the sex assigned. Such surgeries
can include clitoral reductions and vaginoplasties. Does
not refer to gender-affirming procedures sought by somemembers of the transgender community, or by intersex
individuals later in life.

Intersex: An umbrella term that refers to the approximately 1.7 percent of the population born with variations in sex characteristics such as chromosomes, gonads,
and/or genitals that vary from what is considered typical. While an intersex person may also be transgender
if their gender differs from the sex they were assigned atbirth, not all intersex people for whom this is the caseidentify as transgender.
Transgender: Refers to people whose gender differsfrom the sex they were assigned or presumed to be atbirth.

23
APPENDIX A: INFORMED CONSENT ELEMENTS
AND PROCEDURES
A recent study of clinical management practices across multiple
institutions examined the following items in the context ofintersex care specifically:
Table 3 Informed consent specific to DSD
Composite scales
Scale items
Consent procedures
Are children of assenting age given the opportunity to assent or withhold assent for medical procedures (including surgery, laparoscopy,
or any other non-life-saving measures)?
Is a legal/bioethics consult routinely provided in the context of the clinical informed consent process prior to any irreversible procedures if
there is a plan to remove non-dysgenetic ovaries/testes?
Is it the practice of your DSD providers to impose an interval between discussion of treatment options and patient/family decision(known as a “Thinking Period”)?
Consent procedures subscale composite score
Informed consent elementsa
Information:
Whether procedure is medically necessary or elective
Which interventions are reversible/partly reversible/irreversible
In the future the child‘s gender identity may not match surgically reinforced gender: possibility of gender transition
Gender assignment is often less stable in individuals with DSD
Information subscale composite score
Risks/benefits
Potential effects on fertility
Potential effects on sensitivity of sex organs and sexual function
Potential effects on psychological and social adjustment
Potential effects on continence
Potential effects on other functions
Hormonal consequences of removal of gonads (e.g., induced puberty, need for lifelong hormone replacement)
Potential surgical complications and possible need for additional procedures
Genital anomalies may take more than one procedure to correct and may in fact involve multiple procedures
Risks/benefits subscale composite score
Total score
Composite scores are calculated for institutions completing at least 80% of items comprising each scale.
All items are scored yes = 1 (ideal); no = 0 unless otherwise noted:a
1 = discussed and included in written informed consent document; 0.5 = discussed or written only; 0 = neither.

Aimee M. Rolston, et al., Disorders of Sex Development (DSD): Clinical Service Delivery in the United States, 175 A m.
J. Medical Genetics 268 (2017).

APPENDIX B: RESOURCES FOR INTERSEX PATIENTSAND FAMILIESThe following is a list of resources for intersex patientsand their families:interACT
Advocates for Intersex Youth(https://interactadvocates.org/)
AIS-DSDSupport Group (http://www.aisdsd.org)
GenderSpectrum (https://www.genderspectrum.org/)
The Interface Project (https://www.interfaceproject.org/)
DSD
Handbook for Parents (http://dsdguidelines.org)
Human
Rights Watch Report (https://www.hrw.org/
report/2017/07/25/i-want-be-nature-made-me/medically-unnecessary-surgeries-intersex-children-us)
UN Free & Equal (https://www.unfe.org/intersexawareness/)
IntersexCampaign for Equality (https://www.intersexequality.com)