Ethical concerns surrounding sex prediction using noninvasive prenatal screening from pediatric endocrinologists' perspective.

Noninvasive prenatal screening (NIPS) with predicted fetal sex chromosomes included in the results has become increasingly available for pregnant individuals. Predicted fetal sex chromosome results from NIPS are interpreted so as to equate sex chromosomes with sex and gender. As pediatric endocrinologists, we worry about how this use of NIPS harmfully reinforces sex and gender binaries and sets potentially inaccurate assumptions about what the identified chromosomes mean. We use a hypothetical case based on our clinical experience in which the NIPS report of fetal sex does not conform to expectations at birth to highlight ethical concerns surrounding this practice. The use of NIPS for fetal sex chromosome prediction has the potential to perpetuate stigma and bring psychological harm to parents and their future children, particularly those who are intersex, transgender, and gender diverse. The medical community should adopt an approach to the use of NIPS for fetal sex chromosome prediction that recognizes the spectrums of sex and gender to avoid reproducing stigma towards sex- and gender-diverse individuals and associated harms.

Gender affirming medical care of transgender youth.

The number of gender diverse and transgender youth presenting for treatment are increasing. This is a vulnerable population with unique medical needs; it is essential that all pediatricians attain an adequate level of knowledge and comfort caring for these youth so that their health outcomes may be improved. There are several organizations which provide clinical practice guidelines for the treatment of transgender youth including the WPATH and the Endocrine Society and they recommend that certain eligibility criteria should be met prior to initiation of gender affirming hormones. Medical intervention for transgender youth can be broken down into stages based on pubertal development: pre-pubertal, pubertal and post-pubertal. Pre-pubertally no medical intervention is recommended. Once puberty has commenced, youth are eligible for puberty blockers; and post-pubertally, youth are eligible for feminizing and masculinizing hormone regimens. Treatment with gonadotropin releasing hormone agonists are used to block puberty. Their function is many-fold: to pause puberty so that the youth may explore their gender identity, to delay the development of (irreversible) secondary sex characteristics, and to obviate the need for future gender affirmation surgeries. Masculinizing hormone regimens consists of testosterone and feminizing hormone regimens consist of both estradiol as well as spironolactone. In short term studies gender affirming hormone treatment with both estradiol and testosterone has been found to be safe and improve mental health and quality of life outcomes; additional long term studies are needed to further elucidate the implications of gender affirming hormones on physical and mental health in transgender patients. There are a variety of surgeries that transgender individuals may desire in order to affirm their gender identity; it is important for providers to understand that desire for medical interventions is variable among persons and that a discussion about individual desires for surgical options is recommended.

How Forcefully Should Clinicians Encourage Treatment When Disagreement Persists About Obesity Risk?

Pediatric obesity is a major public health problem, and weight reduction in children and adolescents with obesity is associated with improvement in health outcomes. This case of an adolescent diagnosed with obesity whose mother disagrees with the diagnosis illustrates challenges often encountered in clinical practice, including (1) diagnosing a disease in an asymptomatic patient whose future risk for negative health outcomes is uncertain, (2) addressing ethical implications of naming a stigmatizing disease, and (3) resolving conflicting goals and opinions of a patient, caregiver, and physician. Suggestions for navigating disagreement and implementing courses of action are discussed.

Ethics in Pediatric Endocrinology: Curriculum for Fellows and Faculty.

Introduction: In clinical practice, ethical dilemmas are frequently faced by pediatric endocrinologists. This initiative's objectives were to (a) determine if endocrine fellows and faculty perceived that an effective ethics curriculum existed and (b) evaluate whether case-based modules would be an effective tool for ethics education. Methods: Participation was sought from eight large pediatric endocrine programs (home programs and affiliates of the Pediatric Endocrine Society's Ethics Committee members) after the distribution of eight case-based modules (geared mainly to fellows) and pre- and postsurveys. Questions examining self-reported knowledge (K) of the ethical pillars (beneficence, nonmaleficence, autonomy, and justice), attitudes (A) towards these, and the individual's likelihood of utilizing them in clinical practice (P), in addition to the need for/benefit of this curriculum, were assessed using a 5-point Likert scale. Results: Six out of eight programs participated, with surveys completed by fellows (n = 29), faculty (n = 7), and advanced practitioners (n = 3). Of the respondents, only 20.3% believed an effective ethics curriculum was already in place. After module completion, KAP scores improved, with the greatest improvement seen in knowledge scores. Additionally, 94.9% of respondents strongly agreed (n = 26) or agreed (n = 11) that the curriculum would be a valuable addition to fellowship training. All faculty believed that the curriculum was helpful in imparting ethical principles of clinical practice. Discussion: The findings suggest that this curriculum would be useful in knowledge advancement of ethical principles and could fulfill a long-standing need to provide clinical ethics education for faculty and fellows.

Guidelines for Growth Hormone and Insulin-Like Growth Factor-I Treatment in Children and Adolescents: Growth Hormone Deficiency, Idiopathic Short Stature, and Primary Insulin-Like Growth Factor-I Deficiency.

BACKGROUND/AIMS: On behalf of the Drug and Therapeutics, and Ethics Committees of the Pediatric Endocrine Society, we sought to update the guidelines published in 2003 on the use of growth hormone (GH). Because idiopathic short stature (ISS) remains a controversial indication, and diagnostic challenges often blur the distinction between ISS, GH deficiency (GHD), and primary IGF-I deficiency (PIGFD), we focused on these three diagnoses, thereby adding recombinant IGF-I therapy to the GH guidelines for the first time. METHODS: This guideline was developed following the GRADE approach (Grading of Recommendations, Assessment, Development, and Evaluation). RESULTS: This guideline provides recommendations for the clinical management of children and adolescents with growth failure from GHD, ISS, or PIGFD using the best available evidence. CONCLUSION: The taskforce suggests that the recommendations be applied in clinical practice with consideration of the evolving literature and the risks and benefits to each individual patient. In many instances, careful review highlights areas that need further research.

Disorders of sex development-when and how to tell the patient.

Physicians and other providers are often confronted with difficult decisions in the area of disclosure. This article examines a hypothetical situation relevant to the practice of pediatric endocrinology. The parents of a child with a disorder of sex development (DSD) wish the physician to treat their child, but without revealing key medical information to the child. Herein, we will explore the legal and ethical responsibilities of a provider to disclose information to an under-age DSD patient and to provide insight on when and how to tell the patient.

Child assent and parental permission in pediatric research.

Since children are considered incapable of giving informed consent to participate in research, regulations require that both parental permission and the assent of the potential child subject be obtained. Assent and permission are uniquely bound together, each serving a different purpose. Parental permission protects the child from assuming unreasonable risks. Assent demonstrates respect for the child and his developing autonomy. In order to give meaningful assent, the child must understand that procedures will be performed, voluntarily choose to undergo the procedures, and communicate this choice. Understanding the elements of informed consent has been the paradigm for assessing capacity to give assent. This method leaves the youngest, least cognitively mature children vulnerable to waiver of assent and forced research participation. Voluntariness can also be compromised by the influence of authority figures who can exert undue influence and coerce children to participate in research. This paper discusses factors that may influence the decision to give assent/permission, potential parent-child conflict in the assent/permission process and how it is resolved, and potential parental undue influence on research participation. These issues are illustrated with quotations drawn from a larger qualitative study of parental permission and child assent (data not presented). We suggest a developmental approach, viewing assent as a continuum ranging from mere affirmation in the youngest children to the equivalent of the informed consent process in the mature adolescent.