Ethical Issues Considered When Establishing a Pediatrics Center Elizabeth R. Boskey, PhD, MPH,a Judith A. Johnson, JD,b,c Charlotte Harrison, JD, PhD, MPH,b,c Jonathan M. Marron, MD, MPH,b,c,d,e Leah Abecassis, MSN,b,f Allison Scobie-Carroll, LICSW, MBA,b,g Julian Willard, PhD,e David A. Diamond, MD,a Amir H. Taghinia, MD,a Oren Ganor, MDa

As part of establishing a gender surgery center at a pediatric academic abstract hospital, we undertook a process of identifying key ethical, legal, and contextual issues through collaboration among clinical providers, review by hospital leadership, discussions with key staff and hospital support fMedical Intensive Care Unit, dDivision of Hematology/ services, consultation with the hospital’s ethics committee, outreach to Oncology, gDepartment of Social Work, bEthics Advisory Committee, cOffice of Ethics, and aCenter for Gender other institutions providing health care, and meetings with Surgery, Boston Children’s Hospital, Boston, Massachusetts; hospital legal counsel. This process allowed the center to identify key and eCenter for Bioethics, Harvard Medical School, Harvard issues, formulate approaches to resolving those issues, and develop policies University, Boston, Massachusetts and procedures addressing stakeholder concerns. Key issues identified Dr Boskey copresented to the ethics committee, fi during the process included the appropriateness of providing gender- provided topic-speci c documentation to the committee for review, drafted the manuscript, and affirming to adolescents and adults, given the hospital’s mission oversaw all revisions; Ms Johnson led the drafting of and emphasis on pediatric services; the need for education on the clinical the ethics committee response to the initial basis for offered procedures; methods for obtaining adequate informed committee consultation, which was used in the drafting of the manuscript, and contributed consent and assent; the lower and upper acceptable age limits for various significantly to revisions; Dr Harrison, Dr Marron, Ms procedures; the role of psychological assessments in determining surgical Abecassis, Ms Scobie-Carroll, and Dr Willard eligibility; the need for coordinated, multidisciplinary patient care; and the contributed to the ethics committee consultation and contributed significantly to revisions; and Drs importance of addressing historical access inequities affecting transgender Diamond, Taghinia, and Ganor initiated the ethics patients. The process also facilitated the development of policies addressing consultation process, copresented to the ethics the identified issues, articulation of a guiding mission statement, institution committee, worked on all consultations, and fi of ongoing educational opportunities for hospital staff, beginning outreach contributed signi cantly to revisions; and all authors approved the final manuscript as submitted. to the community, and guidance as to future avenues of research and policy DOI: https://doi.org/10.1542/peds.2018-3053 development. Given the sensitive nature of the center’sservicesandthe Accepted for publication Feb 19, 2019 significant clinical, ethical, and legal issues involved, we recommend such a process when a establishing a program for gender surgery in a pediatric Address correspondence to Elizabeth R. Boskey, PhD, MPH, Center for Gender Surgery, Boston Children’s institution. Hospital, 300 Longwood Ave, Boston, MA 02115. E-mail: [email protected] PEDIATRICS (ISSN Numbers: Print, 0031-4005; Online, 1098-4275). As part of the development of the concerns around gender surgery raised Copyright © 2019 by the American Academy of 1,2 Center for Gender Surgery at Boston by other authors. In the fall of 2017, Pediatrics ’ Children s Hospital (BCH), the surgical these concerns were raised over FINANCIAL DISCLOSURE: The authors have indicated team decided to initiate a process of a series of discussions with the they have no financial relationships relevant to this ethical and legal consultation. As the hospital’s administration, ethics article to disclose. first gender surgical center to be committee, legal team, community FUNDING: No external funding. housed in a pediatric facility in the members, and other stakeholders, and , it was expected that several concerns were identified that To cite: Boskey ER, Johnson JA, Harrison C, et al. there would be ethical and legal might be relevant to both this center Ethical Issues Considered When Establishing concerns that were unique to the and other centers working with a Pediatrics Gender Surgery Center. Pediatrics. 2019;143(6):e20183053 setting, in addition to the broader younger transgender patients.

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 143, number 6, June 2019:e20183053 SPECIAL ARTICLE STARTING POINT: THE WORLD somewhat controversial and has nursing, patient care services, social PROFESSIONAL ASSOCIATION OF occasionally been referred to as services, pastoral care, and other TRANSGENDER HEALTH STANDARDS OF “gatekeeping.” clinical services as well as community CARE representatives and ex-officio Despite their awareness of this The World Professional Association of participants from administration and controversy, the center staff believed 9 Transgender Health (WPATH) has legal counsel. it was appropriate for the care laid out standards of care (SOC)3 for paradigm to include a surgery- The ethics committee meeting lasted the treatment of gender- specific behavioral health assessment. ∼2 hours, and there was a vigorous nonconforming people. Although The implemented protocol covers discussion of concerns across a broad these SOC are in the process of being general readiness for surgery, case range of domains. A smaller team of reviewed and revised,4 and are not – management issues that may occur ethics committee members and ethics without controversy,2,5 8 the center around the time of surgery, staff then distilled the discussion team decided to use them as assessment of whether the patient’s points into an outline of ethical issues a starting point for policy expectations for surgery are realistic, and general recommendations for development. As a starting point, the awareness of postsurgical care approaches the center might follow in center decided to follow requirements and likelihood of determining how to address them. recommendations in the SOC that compliance, gender history, and This document was brought back to state that patients are not eligible for fertility assessment. center staff and used to inform policy genital surgery until they have development and help formulate the reached the age of majority and have center’s mission and values lived for at least a year in their INITIAL ETHICS DISCUSSIONS statements (Fig 1). As additional affirmed gender. Twelve months of issues, particularly those around the The center staff consists of hormone therapy is also required, intersection of hospital policy, state a multidisciplinary team of surgeons unless hormone therapy is not law, and fertility preservation, arose (2 plastic surgeons, 1 urologist), clinically indicated.3 With respect to for center staff, less-formal midlevel providers, nurses, a social chest surgeries, the SOC state that discussions were held with ethics worker and researcher, an “Chest surgery in [female-to-male] and/or legal teams to explore administrator, and a designated patients could be conducted earlier, relevant factors to be considered by research specialist. The idea for the preferably after ample time of living the center in developing its policies. center originated with the 3 surgeons, in the desired gender role and after who serve as codirectors. After a year Key questions that arose from the one year of testosterone treatment.3” of planning and seeking out ethics discussions are Other requirements for chest surgery professional development options in addressed below. in both men and women are transgender care, the codirectors persistent, well-documented gender brought the social worker and Is There a Sound Medical Rationale dysphoria; capacity to make an researcher onto the team because of for the Treatment or Surgery to Be informed decision; and evidence that her extensive experience working Provided Through the Center? Is fi any signi cant medical and mental with the gender-diverse patient Such Treatment or Surgery health conditions are well controlled. population. Together, those 4 team Consistent With the Practice of (Note, the requirements for living in members drafted an evidence-based Evidence-Based Medicine? fi the af rmed gender do not require proposal for how the center would be is defined in the living in a binary gender.) Another structured and how care would be American Psychiatric Association’s important aspect of the SOC delivered. They also prepared Diagnostic and Statistical Manual of guidelines is the requirement for a presentation in which they Mental Disorders, Fifth Edition as screening by a behavioral health highlighted the needs of young people the distress that occurs when there professional, which is designed to for gender-affirming surgery, key is a marked incongruence between provide the surgeon with relevant criteria and conceptual the gender a person was assigned information about the patient’s underpinnings for offering the at birth and the gender that they and overall mental surgery (including the SOC), and experience or express.10 The health. That screening is provided to specific surgical solutions. This experience of gender dysphoria, the surgeon in the form of a letter, material was then presented to the and/or identifying as transgender, required for most insurance hospital ethics committee for has been associated with a number authorizations, that establishes the discussion. The ethics committee of serious physical and mental patient's suitability for gender includes members from a range of health disparities, including affirming surgery. This requirement is medical and surgical services, elevated risks of depression,

Downloaded from www.aappublications.org/news by guest on October 2, 2021 2 BOSKEY et al hospital’s patient care policy defines pediatric patients as those who are under the age of 21.

The conclusion that the program was consistent with the hospital’s mission was based on several factors. First, the hospital’s mission statement addresses the importance of serving unmet need. Because of this mission, the hospital had previously established that it is appropriate to follow pediatric conditions into adulthood when other specialty care for these conditions is not available. In fact, a number of hospital departments, including surgical specialties, already provided care for patients into or through adulthood, and the hospital also had standard criteria for patients FIGURE 1 being treated through age 35. Mission statement and values. Because gender dysphoria is often a condition that originates in anxiety, suicidality, substance abuse, mastectomy, a contextually similar childhood, it meets the basis of that 11–15 and HIV. Some of these surgical procedure (reconstructive criteria to the extent that equivalent disparities can be reduced with but optional, often involving body care is not available.28,29 Evidence fi access to transgender-af rming image and sexuality) for which was presented that there was fi 26,27 health care and gender af rmation decision regret has been studied. currently a significant unmet need for 11,16 fi procedures. On the basis of research in the eld, gender affirmation procedures in The center planned to offer gender the clinicians were able to present New England. Although several solid evidence that the treatments to affirmation chest reconstruction, surgeons offered chest surgeries in be provided at the center were , and for the Boston area, there was limited medically sound and necessary to transmasculine individuals (those access to care for adolescents. There improve the health and well-being of assigned female at birth with a more was one other surgical team in the the patients to whom they would be male gender identity) and breast area offering genital affirmation provided, including reduction or augmentation and for surgeries for transgender women, but transfeminine individuals (those alleviation of symptoms of gender genital affirmation surgeries for assigned male at birth with a more dysphoria. transgender men were completely female gender identity). Although the unavailable in the area before the quality of the evidence base is low Is Establishment of the Center opening of the center. As such, one of ’ and relies mostly on short-term Consistent With the Hospital s the motivations for forming the follow-up, the limited existing reports Mission? center was the community reaching suggest that these treatments can be Genital affirmation surgeries, such out to local hospitals looking for an effective way to improve gender as vaginoplasty and phalloplasty, providers to address this gap in care. congruence and body satisfaction for are generally offered to adult While it might, on the surface, make transgender individuals who are patients rather than pediatric more sense to offer genital surgeries interested in such surgeries, and they patients. Therefore, one of the for transgender men at an adult have also been shown to improve questions that received substantial hospital, at the time the center was depression, anxiety, and overall discussion at the ethics meeting was formed, there were no surgeons in quality of life.17–24 Reports of regret whether and how these surgeries fit local adult facilities interested in do occur, but they are rare, affecting into the mission of a pediatric providing that care. In contrast, the ,1% of patients in 1 large study.25 hospital, including its primary center surgeons had both appropriate This rate is substantially lower than commitment to the health and well- expertise and interest in addressing for breast reconstruction after being of pediatric patients. The the unmet need.

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 143, number 6, June 2019 3 In addition to the unmet need in the area as a whole, clinical leaders at BCH also recognized an unmet need affecting current patients and appealed to the hospital for support. The hospital houses the Gender Management Service30,31 (GeMS), a leader in medical gender affirmation for that was founded in 2007 and currently works with hundreds of patients a year. However, when GeMS patients were ready to surgically transition, their care had to be referred outside of the hospital system. There was agreement by center staff and hospital leaders that a dedicated gender surgery center would best serve the hospital’s mission by providing comprehensive care options and continuity of care for those transgender adolescents and young adults who had been treated in GeMS and were interested in surgical affirmation. Although the 2 programs run entirely separately, the location of the center in a pediatric hospital, with access to the expertise of GeMS FIGURE 2 Patient care flow sheet. MD, medical doctor; NP, nurse practitioner; PA, physician’s assistant; SW, providers, meant that it was also well social worker. placed to address the particular psychological and medical challenges experienced by transgender youth, determination, are fundamental ethics team recommended that the including an elevated risk of bullying, elements of medical ethics.35 The center provide services designed to violence, and other forms of school- hospital has a stated commitment to meet patients’ psychosocial, based harrassment.32–34 serving a diverse population, emotional, and spiritual needs. This representing many nationalities, recommendation was addressed by ’ The hospital s mission also includes cultures, faiths, and value systems as the integration of a social worker research and education. Given its well as those with diverse gender with transgender health experience academic nature, and the presence of identities and sexual preferences. The and training in the core team, who the GeMS program, the center is well ethics discussion process addressed would explore patients’ motivations situated to contribute to research in this question by examining research for surgery as part of the assessment fi the eld of transgender care in which it was shown that (Fig 2), and by the availability of (especially continuity of care from identifying with a gender that is transgender-affirming chaplaincy prepuberty to adult transitioning). inconsistent with one’s physical staff within the hospital. Center staff The center can also support the characteristics can lead to also determined that discussions of ’ hospital s commitment to education, psychosocial difficulties and any surgical procedure should be as is more fully described below. a decreased sense of self-worth.36–41 instituted by the patient rather than Although not all transgender offered by the team, to avoid giving Does the Establishment of the individuals want surgery, treatment the impression that providers felt any Center, and the Delivery of Its to help reduce the dissonance particular surgery was a necessary Services, Demonstrate Respect for between physical body and gender component of transition. The ethics Human Dignity and Worth? identity has the potential to restore team also recommended that center Respect for human dignity and worth, individuals’ sense of dignity and staff identify avenues for increasing including support for individual self- worth. In support of this goal, the understanding of the population

Downloaded from www.aappublications.org/news by guest on October 2, 2021 4 BOSKEY et al served by the center, both within and taken various routes to medical There was substantial discussion outside the walls of BCH; fostering transition. among the ethics team, hospital sensitivity and support throughout counsel, and center providers as to the center and the hospital for this Debate on this topic is not whether the consent of both parents population; and including input of restricted to medical transition must be required for minor this community into the development care. There is also substantial patients to undergo gender-affirming and operations of the center. In disagreement among providers and surgery. Although consent from agreement with this goal, center staff others as to whether the current both parents, alongside assent from have sought out opportunities to train guidelines requiring one or more the minor, is the standard for care providers and community members mental health assessments for in the hospital’s GeMS program, both inside and outside of the patients to move forward with many transgender youth have fi – hospital42 and continue to seek out gender af rmation surgeries are complicated family situations.32,53 57 opportunities to provide professional critical to providing quality care, are This may make acquiring 2-parent problematic gatekeeping, or are and community education whenever 45–51 consent to perform surgery on an possible. This includes participation something in between. Because adolescent unfeasible or impossible, in the Care for Patients with Diverse a clear answer to the particularly when 1 parent is no Sexual Orientations and Gender appropriateness of these guidelines longer involved in the minor’s life. Identities elective at Harvard Medical is not supported in the current Eventually, the center decided on School and offering medical students evidence base, the center decided a policy incorporating the standard opportunities to engage in additional that the most-appropriate way to of 2-parent consent but with the research and practice with this address the controversy would be to intention to develop formal population. The center has also follow the SOC while researching procedures allowing for appeal in fi sought input from community the burdens and bene ts of the cases in which such a requirement members and actively recruited behavioral health requirements, appears to interfere unduly with transgender staff. particularly with respect to the informed choices of minors and providing services to adolescents. raises the possibility of Does the Establishment of the To date, the center has enrolled significant harm. Center, and Delivery of Its Services, over 70 patients into a longitudinal Demonstrate Respect for Patient study in which researchers are Although for some people the Autonomy? assessing quality of life, mental requirements for parental consent and behavioral health assessment Respect for patient autonomy is health, and issues and costs of raised questions about the the ethical principle that generated health care access in the context of fi autonomy of adolescent patients, the most controversy when gender-af rming surgery. for others it was reassuring. There developing the center’s policies A related issue was whether minors is substantial debate around and practices for patient care. were able to provide informed assent adolescents’ capacity for decision- Questions of respect for patient to the kinds of procedures being making and ability to conceptualize autonomy are at the core of much of – offered. Addressing this issue is long-term outcomes.58 60 The the debate around the current a required component of the outside involvement of both parents and WPATH SOC and screening letters of support needed to access multiple behavioral health guidelines, specifically care surgery. In addition, it has been providers in the process of structures that require behavioral previously established that minors determining eligibility for surgery, health professionals to provide legally and ethically can provide as well as the patients’ discussion approval to access care rather than informed consent, without parent with the interdisciplinary team of prioritizing access through permission, for many medical the benefits and risks (including a process of informed consent, therapies related to sexual and possible regrets), serves as a check a model that is being adopted more 52 mental health. on the possibility of impulsivity and and more often for hormone reduces the likelihood that age- treatment.6 This is true not just in Another issue raised around informed related cognitive factors would lead the adult setting, but in the consent was specific to the pediatric to decision regret. pediatric setting, as well. Although population, namely the role of the GeMS model requires extensive parents and guardians in providing As such, the role of parents is not psychological screening,30 other informed consent (sometimes simply to provide informed consent. models are also in place for referred to as informed permission), They are also important sources of pediatric hormone access,43,44 and because minors generally can provide insight and support throughout the the center sees patients who have assent but not consent for care.52 gender affirmation process. Parental

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 143, number 6, June 2019 5 concerns can give important insights continue to provide in an ongoing and families than lesbian, gay, and into adolescent maturity, gender manner, training to health care and bisexual patients and families.62 stability, mental health, and well- support professionals throughout the This is being addressed through being and provide a window into hospital on both how to support offering increased opportunities for additional areas that the behavioral patients and the importance of professional education on gender health provider might need to explore gender-affirming care for individual surgery and gender-affirming care before surgical approval. Because of well-being. throughout the hospital. Center staff this, parent and guardian education is offeredmorethan20trainingsto How Will the Center Show Respect an important part of the consult BCH staff between December 2017 for, and Accommodate, Religious or process for minors seeking surgery, Moral Objections by Staff to and December 2018, and trainings ’ as is assessment of those adults Participating in the Procedures continue to be requested across interest in and willingness to support Offered by the Center? a variety of units and departments. the patient through surgery. Situations in which parents disagree The hospital has some existing How Should the Center Allocate with each other are particularly policies related to religious and moral Resources in the Event That the Need challenging and addressed on a case- objections by staff. The personnel for Services Exceeds Capacity? “ by-case basis. policy on Requests to be excused There is a documented unmet need ” from Patient Care Responsibilities, for gender-affirming services, If the Procedures Performed by the for example, states that the hospital including surgical procedures.32,63– “ Center Elicit Some Public Criticism will consider a request by a staff 66 This was clearly visible in the fact on the Basis of Religious or Moral member not to participate in aspects that, within a few months of Boston ’ Views, How Should the Hospital of a patient s care or treatment when Medical Center starting to offer fl Respond? such care or treatment con icts with insurance-covered vaginoplasty, ’ fi Members of the ethics committee a staff member s bona de ethical or their waitlist quickly grew to over ” brought up a concern that some religious beliefs. However, the policy 200 patients.67 Because of the members of the public may have is also clear that such a request possibility of waitlists for the moral or religious objections to cannot be accommodated if it will center’s services, the ethics team transgender surgery. Objections had negatively affect care for the patient. recommended that the center have been raised when the GeMS program All participants involved in the a clear and consistent method of was first started, including some discussions recognized the prioritizing patients for care. The death threats to staff, and it was importance of education in center decided to take a first-come, thought that it would be important to addressing staff moral and religious first-served approach to initial prepare for any similar backlash in concerns. To help accomplish this consultation with patients. However, response to the start of the center. goal, center staff involved in the center recognized there would The possibility of moral or religious education attempt to provide a safe be a need to undertake further objections to surgery was not seen as space for questioning and exploration of methods for allocating a barrier to providing these services, discussion of care practices.42 In resources in the event that limits and the ethics team recommended addition, center staff are currently were reached. From the beginning, that appropriate hospital staff, in the process of deploying center staff anticipated that hair including public relations staff, a validated survey61 to examine removal would likely provide the familiarize themselves with the provider attitudes about and self- primary scheduling barrier for nature of possible objections to the assessed competence in lesbian, gay, patients seeking genital affirmation, establishment of the center and with bisexual, and transgender health and that has proven to be the case. the underlying medical and ethical care across the hospital. It is (Hair removal is a requirement for reasons for establishing the center to suggested in the preliminary results genital surgery because of concerns be able to engage in informed that provider attitudes are primarily about the presence of hair in the communication with the public. To positive, although there were some neourethra or neovagina.) Chest accomplish this goal, center staff responses expressing moral surgery scheduling is more worked with marketing and concerns about working with straightforward and primarily communications staff at the hospital lesbian, gay, bisexual, and limited by the availability of to develop evidenced-based transgender patients and families. operating room time. While messaging and responses to expected Results also suggest that providers continuing to use the first come, first objections and to increase staff were consistently less comfortable, served principle, the center is confidence with transgender issues. and felt less competent, about working on ways to shorten waiting Center staff have also offered, and working with transgender patients times whenever feasible.

Downloaded from www.aappublications.org/news by guest on October 2, 2021 6 BOSKEY et al THE DILEMMA OF PATIENT AGE significantly limited in life activities assent52 and a detailed assessment After the initial ethical discussions bythepresenceoftheirbreasts. of whether the young woman will be were conducted, there remained Because the risk of desistence of capable of the extensive a transgender identity declines postsurgical care required by the several questions that the center 22,69 72,74 wished to explore further. One such sharply after puberty, the procedure. It is also critical to question was determining an center thought that this allowed for explicitly address the fact that the appropriate age range for patients to a reasonable balance of recognizing procedure will render the patient be able to access each type of gender- the possible risk of a premature permanently sterile and attempt to ’ affirming surgical procedure. Because decision with respecting patients determine whether the patient is the hospital is a pediatric institution, current needs and preferences. capable of making an informed decision to permanently impact with policies about the age ranges for Determining the minimum age for their fertility. Although fertility which it is appropriate to provide genital surgeries was somewhat more assessment is, in theory, a standard care, this discussion needed to complicated. Although all center staff part of assessment earlier in the address both the lower and upper felt comfortable with requiring transition process, the center team bounds of care. phalloplasty candidates to wait until felt it was critical to include such the age of majority for surgery, the an assessment as part of the initial The WPATH SOC state that genital same was not true for vaginoplasty social work consult with every surgery should not be done until the candidates. Transgender women who potential patient, regardless of age. age of majority in any given country have not undergone vaginoplasty may This fertility assessment includes (18 in the United States), but that it face a number of challenges related to questions about whether the maybereasonableforchest the existential threat that is 3 patient wants to have biological surgeries to be done earlier. sometimes perceived to accrue children, any history of gamete Unfortunately, there is extremely through the presence of male preservation, and appropriate limited published research on the genitalia in a women’s-only space.42 referrals as necessary. The center impact of chest surgeries on the This concern may be particularly team has found that doing such an pediatric and young adult salient for young transgender women assessment is critical because population. In what research there who are going off to college and who a sizeable minority of patients do is, it is suggested that chest surgery want to live, and be treated, like any not have a clear understanding of can make it easier for young other young women on campus. As the fertility impacts of gender transmasculine individuals to a result, a number of American transition at the time of the initial participate more fully in society, surgeons perform vaginoplasty consult. including making it easier to procedures in patients under the age exercise and maintain their of 18 to allow young women to begin The center staff eventually came 68 health. This research is supported their adult lives feeling safe and to the conclusion that it is by the clinical experience of center affirmed in their gender.5 Although appropriate to offer to staff. also has mental health outcomes associated certain individuals before the age of the potential to allow young with vaginoplasty have generally majority so that they can safely transfeminine individuals to been shown to be quite positive, to embark on their adult lives. However, present more effectively as date there have been few published to address legal concerns related to feminine, although fewer studies specifically exploring the performing vaginoplasties in transfeminine than transmasculine psychosocial outcomes of Massachusetts minors, it was individuals are interested in chest vaginoplasty in minors.70,71 Two necessary to institute a policy 32 surgery. studies following the same small requiring such patients to either have population of girls who underwent undergone fertility preservation or to After weighing the guidelines and vaginoplasty during adolescence did seek out a court order granting feedback from stakeholders, the report improved psychological permission for surgery. To date, the center decided to deviate from the functioning and decreased gender only family to which this option has SOC and set 15 as a minimum age dysphoria at 1 and 5 years follow- been offered has decided to pursue for undergoing a chest up.72,73 the court order. reconstruction or breast augmentation, with surgery at age However, performing vaginoplasty 15 only being appropriate for those in patients under the age of 18 individuals who have had a strong raises several particular concerns.1 CONCLUSIONS and consistent gender identity and, These include the ability of the Building a gender surgery center in in rare cases, those who are patient to adequately provide a pediatric setting requires

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 143, number 6, June 2019 7 institutions to address unique consultation, as well as a broad comments and insights during their ethical and legal challenges. It is range of staff, patient, and public meeting to discuss this topic. important for providers and educational opportunities, are likely administrators to have a clear to be needed. Such processes are understanding of the local legal necessary to provide optimal care environment and relevant ethical for members of the transgender ABBREVIATIONS principles. Plans for navigation of community in an ethically BCH: Boston Children’s Hospital ethical challenges should be responsible fashion. GeMS: Gender Management discussed early in the process, Service and institutions should plan to SOC: standards of care respondtoethicalandmoral ACKNOWLEDGMENTS WPATH: World Professional considerations brought up by staff, The authors thank the members of Association of patients, and the public at large. Boston Children’s Hospital Ethics Transgender Health Ongoing ethical and legal Advisory Committee for thoughtful

POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.

REFERENCES 1. Milrod C. How young is too young: barriers to gender-affirming health 14. Edmiston EK, Donald CA, Sattler AR, ethical concerns in genital surgery of care for transgender youth. J Adolesc Peebles JK, Ehrenfeld JM, Eckstrand KL. the transgender MTF adolescent. J Health. 2016;59(3):254–261 Opportunities and gaps in primary care Med. 2014;11(2):338–346 preventative health services for 8. Nelson JL. Understanding transgender transgender patients: a systemic 2. Vrouenraets LJJJ, Fredriks AM, and medically assisted gender transition: review. Transgend Health. 2016;1(1): Hannema SE, Cohen-Kettenis PT, de feminism as a critical resource. AMA 216–230 Vries MC. Early medical treatment of JEthics. 2016;18(11):1132–1138 children and adolescents with gender 15. Brown GR, Jones KT. Mental health and 9. Boston Children’s Hospital. Ethics dysphoria: an empirical ethical study. medical health disparities in 5135 Advisory Committee. Available at: www. J Adolesc Health. 2015;57(4):367–373 transgender veterans receiving childrenshospital.org/clinician- healthcare in the veterans health 3. World Professional Association of resources/for-boston-childrens-staff/ administration: a case-control study. Transgender Health. Standards of care ethics-advisory-committee. Accessed LGBT Health. 2016;3(2):122–131 for the health of , August 27, 2018 transgender, and gender 16. Wilson EC, Chen Y-H, Arayasirikul S, 10. American Psychiatric Association. nonconforming people. 7th version. Wenzel C, Raymond HF. Connecting the Gender dysphoria. In: Diagnostic and 2011. Available at: www.wpath.org. dots: examining transgender women’s Statistical Manual of Mental Disorders. Accessed September 23, 2017 utilization of transition-related medical 5th ed. Philadelphia, PA: American care and associations with mental 4. Colebunders B, Cuypere GD, Monstrey S. Psychiatric Association health, substance use, and HIV. J Urban New criteria for sex reassignment 11. Christian R, Mellies AA, Bui AG, Lee R, Health. 2015;92(1):182–192 surgery: WPATH standards of care, Kattari L, Gray C. Measuring the health version 7, revisited. Int 17. Owen-Smith AA, Gerth J, Sineath RC, of an invisible population: lessons from J Transgenderism. 2015;16(4):222–233 et al. Association between gender the Colorado Transgender Health confirmation treatments and 5. Milrod C, Karasic DH. Age is just Survey. J Gen Intern Med. 2018;33(10): perceived gender congruence, body a number: WPATH-affiliated surgeons’ 1654–1660 image satisfaction, and mental experiences and attitudes toward 12. Reisner SL, White JM, Bradford JB, health in a cohort of transgender vaginoplasty in transgender females Mimiaga MJ. Transgender health individuals. J Sex Med. 2018;15(4): under 18 years of age in the United disparities: comparing full cohort and 591–600 States. J Sex Med. 2017;14(4):624–634 nested matched-pair study designs in 18. Agarwal CA, Scheefer MF, Wright LN, 6. Cavanaugh T, Hopwood R, Lambert C. a community health center. LGBT et al. Quality of life improvement after Informed consent in the medical care of Health. 2014;1(3):177–184 chest wall masculinization in female-to- transgender and gender- 13. Dragon CN, Guerino P, Ewald E, Laffan male transgender patients: nonconforming patients. AMA J Ethics. AM. Transgender medicare a prospective study using the BREAST-Q 2016;18(11):1147–1155 beneficiaries and chronic conditions: and Body Uneasiness Test. J Plast 7. Gridley SJ, Crouch JM, Evans Y, et al. exploring fee-for-service claims data. Reconstr Aesthet Surg. 2018;71(5): Youth and caregiver perspectives on LGBT Health. 2017;4(6):404–411 651–657

Downloaded from www.aappublications.org/news by guest on October 2, 2021 8 BOSKEY et al 19. van de Grift TC, Pigot GLS, Boudhan S, 29. Turban JL, Ehrensaft D. Research children. Clin Child Psychol Psychiatry. et al. A longitudinal study of motivations review: gender identity in youth: 2013;18(3):464–474 before and psychosexual outcomes treatment paradigms and 39. Olson J, Schrager SM, Belzer M, Simons fi after genital gender-con rming surgery controversies. J Child Psychol LK, Clark LF. Baseline physiologic and – in transmen. J Sex Med. 2017;14(12): Psychiatry. 2018;59(12):1228 1243 psychosocial characteristics of 1621–1628 30. Tishelman AC, Kaufman R, Edwards- transgender youth seeking care for 20. Defreyne J, Motmans J, T’sjoen G. Leeper L, Mandel FH, Shumer DE, Spack gender dysphoria. J Adolesc Health. Healthcare costs and quality of life NP. Serving transgender youth: 2015;57(4):374–380 fi outcomes following gender af rming challenges, dilemmas and clinical 40. Guss C, Shumer D, Katz-Wise SL. surgery in trans men: a review. Expert examples. Prof Psychol Res Pr. 2015; Transgender and gender – Rev Pharmacoecon Outcomes Res. 46(1):37 45 nonconforming adolescent care: 2017;17(6):543–556 31. Edwards-Leeper L, Spack NP. psychosocial and medical 21. Lindqvist EK, Sigurjonsson H, Psychological evaluation and medical considerations. Curr Opin Pediatr. 2015; Möllermark C, Rinder J, Farnebo F, treatment of transgender youth in an 27(4):421–426 “ Lundgren TK. Quality of life improves interdisciplinary Gender Management 41. Olson-Kennedy J, Cohen-Kettenis PT, ” early after gender reassignment Service (GeMS) in a major pediatric Kreukels BPC, et al. Research priorities – surgery in transgender women. Eur center. J Homosex. 2012;59(3):321 336 for gender nonconforming/transgender J Plast Surg. 2017;40(3):223–226 32. James SE, Herman JL, Rankin S, et al. youth: gender identity development and 22. de Vries ALC, McGuire JK, Steensma TD, The Report of the 2015 U.S. biopsychosocial outcomes. Curr Opin Wagenaar EC, Doreleijers TA, Cohen- Transgender Survey. Washington, DC: Endocrinol Obes. 2016;23(2): Kettenis PT. Young adult psychological National Center for Transgender 172–179 outcome after puberty suppression and Equality; 2016. Available at: www. 42. Boskey E, Taghinia A, Ganor O. Public gender reassignment. Pediatrics. 2014; transequality.org/sites/default/files/ accommodation laws and gender panic 134(4):696–704 docs/usts/USTS Full Report - FINAL 1.6. in clinical settings. AMA J Ethics. 2018; 17.pdf. Accessed October 02, 2017 23. Weigert R, Frison E, Sessiecq Q, Al 20(11):E1067–E1074 Mutairi K, Casoli V. Patient satisfaction 33. Day JK, Perez-Brumer A, Russell ST. Safe 43. Janicka A, Forcier M. Transgender and with breasts and psychosocial, sexual, schools? Transgender youth’s school gender nonconforming youth: and physical well-being after breast experiences and perceptions of school psychosocial and medical augmentation in male-to-female climate. J Youth Adolesc. 2018;47(8): considerations. R I Med J (2013). 2016; . Plast Reconstr Surg. 1731–1742 99(9):31–34 2013;132(6):1421–1429 34. Eisenberg ME, Gower AL, McMorris BJ, 44. Rafferty J; Committee on Psychosocial 24. Papadopulos NA, Lellé JD, Zavlin D, et al. Rider GN, Coleman E. Emotional Aspects of Child and Family Health; Quality of life and patient satisfaction distress, bullying victimization, and Committee on Adolescence; Section on following male-to-female sex protective factors among transgender Lesbian, Gay, Bisexual, and Transgender reassignment surgery. J Sex Med. 2017; and gender diverse adolescents in city, Health and Wellness. Ensuring 14(5):721–730 suburban, town, and rural locations comprehensive care and support for [published online ahead of print June 25. Wiepjes CM, Nota NM, de Blok CJM, transgender and gender-diverse 25, 2018]. J Rural Health. doi:10.1111/ et al. The amsterdam cohort of gender children and adolescents. Pediatrics. jrh.12311 dysphoria study (1972-2015): trends in 2018;142(4):e20182162 prevalence, treatment, and regrets. 35. Beauchamp TL, Childress JF. 45. Murphy TF. Should mental health J Sex Med. 2018;15(4):582–590 Principles of Biomedical Ethics. 6th ed. screening and psychotherapy be New York City, NY: Oxford University fi 26. Sheehan J, Sherman KA, Lam T, Boyages required prior to body modi cation for Press; 2008 J. Regret associated with the decision ? AMA J Ethics. 2016; – for breast reconstruction: the 36. Durwood L, McLaughlin KA, Olson KR. 18(11):1079 1085 association of negative body image, Mental health and self-worth in socially 46. Toivonen KI, Dobson KS. Ethical issues in distress and surgery characteristics transitioned transgender youth. JAm psychosocial assessment for sex with decision regret. Psychol Health. Acad Child Adolesc Psychiatry. 2017; reassignment surgery in Canada. Can 2008;23(2):207–219 56(2):116–123.e2 Psychol. 2017;58(2):178–186 27. Zhong T, Bagher S, Jindal K, et al. The 37. van de Grift TC, Kreukels BPC, Elfering L, 47. Schulz SL. The informed consent influence of dispositional optimism on et al. Body image in transmen: model of transgender care: an decision regret to undergo major multidimensional measurement and alternative to the diagnosis of gender breast reconstructive surgery. J Surg the effects of mastectomy. J Sex Med. dysphoria. J Humanist Psychol. 2018; Oncol. 2013;108(8):526–530 2016;13(11):1778–1786 58(1):72–92 28. Ristori J, Steensma TD. Gender 38. Rijn AB, Steensma TD, Kreukels BPC, 48. Hale CJ. Ethical problems with the dysphoria in childhood. Int Rev Cohen-Kettenis PT. Self-perception in mental health evaluation standards of Psychiatry. 2016;28(1):13–20 a clinical sample of gender variant care for adult gender variant

Downloaded from www.aappublications.org/news by guest on October 2, 2021 PEDIATRICS Volume 143, number 6, June 2019 9 prospective patients. Perspect Biol Med. adults. Arch Sex Behav. 2018;47(4): Wall Street Journal. September 26, 2007;50(4):491–505 1195–1207 2016. Available at: https://www.wsj. com/articles/with-insurers-on-board- 49. Bouman WP, Richards C, Addinall RM, 58. Salter EK. Conflating capacity & more-hospitals-offer-transgender- et al. Yes and yes again: are standards authority: why we’re asking the wrong surgery-1474907475. Accessed July 12, of care which require two referrals for question in the adolescent decision- 2018 genital reconstructive surgery ethical? making debate. Hastings Cent Rep. Sex Relationship Ther. 2014;29(4): 2017;47(1):32–41 68. Olson-Kennedy J, Warus J, Okonta V, – 377 389 59. Michaud P-A, Blum RW, Benaroyo L, Belzer M, Clark LF. Chest reconstruction and chest dysphoria in transmasculine 50. Selvaggi G, Giordano S. The role of Zermatten J, Baltag V. Assessing an minors and young adults: comparisons mental health professionals in gender adolescent’s capacity for autonomous of nonsurgical and postsurgical reassignment surgeries: unjust decision-making in clinical care. cohorts. JAMA Pediatr. 2018;172(5): discrimination or responsible care? J Adolesc Health. 2015;57(4):361–366 431–436 Aesthetic Plast Surg. 2014;38(6): 60. Partridge BC. The mature minor: some – 1177 1183 critical psychological re flections on the 69. Steensma TD, Biemond R, de Boer F, Cohen-Kettenis PT. Desisting and 51. Fraser L, Knudson G. Past and future empirical bases. J Med Philos. 2013; persisting gender dysphoria after challenges associated with standards 38(3):283–299 childhood: a qualitative follow-up study. of care for clients. 61. Bidell MP. The lesbian, gay, bisexual, Clin Child Psychol Psychiatry. 2011; Psychiatr Clin North Am. 2017;40(1): and transgender development of – – 16(4):499 516 15 27 clinical skills scale (LGBT-DOCSS): 70. Becker I, Auer M, Barkmann C, et al. A 52. Katz AL, Webb SA; Committee on establishing a new interdisciplinary cross-sectional multicenter study of Bioethics. Informed consent in decision- self-assessment for health providers. multidimensional body image in making in pediatric practice. Pediatrics. J Homosex. 2017;64(10):1432–1460 adolescents and adults with gender 2016;138(2):e20161485 62. Boskey ER, Taghinia AH, Ganor O. Self- dysphoria before and after transition- 53. Jacobs J, Freundlich M. Achieving assessment of clinical competence with related medical interventions. Arch Sex permanency for LGBTQ youth. Child LGBT patients at a pediatric hospital Behav. 2018;47(8):2335–2347 Welfare. 2006;85(2):299–316 [published online ahead of print March 25, 2019]. Social Work in Health Care. 71. Mahfouda S, Moore JK, Siafarikas A, 54. Katz-Wise SL, Ehrensaft D, Vetters R, doi:10.1080/00981389.2019.1588189 et al. Gender-affirming hormones and Forcier M, Austin SB. Family functioning surgery in transgender children and and mental health of transgender and 63. Reisner SL, Poteat T, Keatley J, et al. adolescents [published online ahead of gender-nonconforming youth in the Global health burden and needs of print December 6, 2018]. Lancet trans teen and family narratives transgender populations: a review. Diabetes Endocrinol. doi:10.1016/S2213- – project. J Sex Res. 2018;55(4–5): Lancet. 2016;388(10042):412 436 8587(18)30305-X 582–590 64. Puckett JA, Cleary P, Rossman K, 72. Cohen-Kettenis PT, van Goozen SH. Sex 55. Flentje A, Heck NC, Sorensen JL. Newcomb ME, Mustanski B. Barriers to reassignment of adolescent fi Characteristics of transgender gender-af rming care for transgender transsexuals: a follow-up study. JAm individuals entering substance abuse and gender nonconforming individuals. Acad Child Adolesc Psychiatry. 1997; – treatment. Addict Behav. 2014;39(5): Sex Res Soc Policy. 2018;15(1):48 59 36(2):263–271 969–975 65. Sineath RC, Woodyatt C, Sanchez T, et al. 73. Smith YL, van Goozen SH, Cohen- 56. Le V, Arayasirikul S, Chen Y-H, Jin H, Determinants of and barriers to Kettenis PT. Adolescents with gender Wilson EC. Types of social support and hormonal and surgical treatment identity disorder who were accepted or parental acceptance among receipt among transgender people. rejected for sex reassignment surgery: – transfemale youth and their impact on Transgend Health. 2016;1(1):129 136 a prospective follow-up study. JAm mental health, sexual debut, history of 66. White Hughto JM, Rose AJ, Pachankis Acad Child Adolesc Psychiatry. 2001; sex work and condomless anal JE, Reisner SL. Barriers to gender 40(4):472–481 intercourse. J Int AIDS Soc. 2016;19(3 transition-related healthcare: 74. Buncamper ME, van der Sluis WB, van suppl 2):20781 identifying underserved transgender der Pas RSD, et al. Surgical outcome adults in Massachusetts. Transgend 57. Schmitz RM, Tyler KA. The complexity of after penile inversion vaginoplasty: Health. 2017;2(1):107–118 family reactions to identity among a retrospective study of 475 homeless and college lesbian, gay, 67. Reddy S. With insurers on board, more transgender women. Plast Reconstr bisexual, transgender, and queer young hospitals offer transgender surgery. Surg. 2016;138(5):999–1007

Downloaded from www.aappublications.org/news by guest on October 2, 2021 10 BOSKEY et al Ethical Issues Considered When Establishing a Pediatrics Gender Surgery Center Elizabeth R. Boskey, Judith A. Johnson, Charlotte Harrison, Jonathan M. Marron, Leah Abecassis, Allison Scobie-Carroll, Julian Willard, David A. Diamond, Amir H. Taghinia and Oren Ganor Pediatrics 2019;143; DOI: 10.1542/peds.2018-3053 originally published online May 13, 2019;

Updated Information & including high resolution figures, can be found at: Services http://pediatrics.aappublications.org/content/143/6/e20183053 References This article cites 68 articles, 3 of which you can access for free at: http://pediatrics.aappublications.org/content/143/6/e20183053#BIBL Subspecialty Collections This article, along with others on similar topics, appears in the following collection(s): Ethics/Bioethics http://www.aappublications.org/cgi/collection/ethics:bioethics_sub Adolescent Health/Medicine http://www.aappublications.org/cgi/collection/adolescent_health:me dicine_sub Permissions & Licensing Information about reproducing this article in parts (figures, tables) or in its entirety can be found online at: http://www.aappublications.org/site/misc/Permissions.xhtml Reprints Information about ordering reprints can be found online: http://www.aappublications.org/site/misc/reprints.xhtml

Downloaded from www.aappublications.org/news by guest on October 2, 2021 Ethical Issues Considered When Establishing a Pediatrics Gender Surgery Center Elizabeth R. Boskey, Judith A. Johnson, Charlotte Harrison, Jonathan M. Marron, Leah Abecassis, Allison Scobie-Carroll, Julian Willard, David A. Diamond, Amir H. Taghinia and Oren Ganor Pediatrics 2019;143; DOI: 10.1542/peds.2018-3053 originally published online May 13, 2019;

The online version of this article, along with updated information and services, is located on the World Wide Web at: http://pediatrics.aappublications.org/content/143/6/e20183053

Pediatrics is the official journal of the American Academy of Pediatrics. A monthly publication, it has been published continuously since 1948. Pediatrics is owned, published, and trademarked by the American Academy of Pediatrics, 345 Park Avenue, Itasca, Illinois, 60143. Copyright © 2019 by the American Academy of Pediatrics. All rights reserved. Print ISSN: 1073-0397.

Downloaded from www.aappublications.org/news by guest on October 2, 2021