Faculty Bibliography

BACKGROUND:Offering fertility preservation (FP) prior to gonadotoxic therapy, including cancer care and gender-affirming treatment, is now considered standard of care. Periodically, parents and children disagree about whether to pursue FP. However, it is unknown how often this occurs and how disagreement is handled when it arises. Moreover, there is no clear guidance on how to resolve these difficult situations. OBJECTIVE AND RATIONALE/OBJECTIVE:The purpose of this scoping review is to provide an overview of available research evidence about parent-child disagreement regarding FP in order to establish that disagreement occurs in practice, understand the basis for disagreement and explore suggestions for how such disputes could be resolved. Based on our findings, we offer a discussion of the ethical principles at stake when disagreement occurs, which can be used to guide clinicians' approaches when these challenging scenarios present. SEARCH METHODS/METHODS:A comprehensive literature search was run in several databases, including PubMed/Medline, Embase and the Cochrane Library. The search was performed in February 2021 and updated in August 2021. Articles were included in the final review if they discussed how parents or children wanted their views on FP taken into account, presented evidence that parent-child discordance regarding FP exists, discussed how to handle disagreement in a particular case or offered general suggestions for how to approach parent-child discordance about FP. Studies were excluded if the patients were adult only (age 18 years and older), pertained to fertility-sparing treatments (e.g. gonad shielding, gonadopexy) rather than fertility-preserving treatments (e.g. testicular tissue cryopreservation, ovarian tissue cryopreservation, oocyte cryopreservation or sperm cryopreservation) or explored the views of clinicians but not patients or parents. Meta-synthesis was used to synthesize and interpret data across included studies and thematic analysis was used to identify common patterns and themes. OUTCOMES/RESULTS:In total, 755 publications were screened, 118 studies underwent full-text review and 35 studies were included in the final review. Of these studies, 7 discussed how parents or children wanted their opinions to be incorporated, 11 presented evidence that discordance exists between parents and children regarding FP, 4 discussed how disagreement was handled in a particular case and 21 offered general suggestions for how to approach parent-child disagreement. There was a range of study designs, including quantitative and qualitative studies, case studies, ethical analyses and commentaries. From the thematic analysis, four general themes regarding FP disagreement emerged, and four themes relating to the ethical principles at stake in parent-child disagreement were identified. The general themes were: adolescents typically desire to participate in FP decision-making; some parents prefer not to involve their children; minors may feel more favorably about FP than their parents; and transgender minors and their parents may have unique reasons for disagreement. The ethical principles that were identified were: minor's best interest; right to an open future; minor's autonomy; and parental autonomy. WIDER IMPLICATIONS/CONCLUSIONS:This study offers an overview of available research on the topic of parent-child disagreement regarding FP and discusses the ethical considerations at stake when disagreement occurs. The findings can be used to inform guidance for clinicians presented with FP disagreement in practice.

The practice of modern craniomaxillofacial surgery has been defined by emergent technologies allowing for the acquisition, storage, utilization, and transfer of massive amounts of sensitive and identifiable patient data. This alone has thrust providers into an unlikely and unprecedented role as the stewards of vast databases of digital information. This data powers the potent surgical tool of virtual surgical planning, a method by which craniomaxillofacial surgeons plan and simulate procedural outcomes in a digital environment. Further complicating this new terrain is the involvement of third-party contractors-a necessary presence in bringing raw data to bear in the office, virtual space, and operating room. The individual privileges and responsibilities of patients, providers, and vendors towards data are situated within the most recent U.S. court rulings and regulations. This paper offers guidance for overseeing the safe and responsible transfer to third-party contractors, and provides suggestions for negotiating the trinary relationship between physicians, their patients, and the vendors offering this transformative technology.

PURPOSE:The aim of the study was to describe factors that may impact pediatric trainees' willingness to disclose medical errors using clinical vignettes. METHODS:A single-center cross-sectional anonymous survey of pediatric residents and fellows at a large urban medical center in 2019 was conducted. Trainees were provided with clinical vignettes depicting an error resulting in a serious safety event (SSE), minor safety event (MSE), and near miss safety event (NMSE) and were asked to classify the type of safety event and rate and explain their agreement or disagreement with disclosure. Survey items also evaluated trainees' personal experiences with errors and disclosure. Descriptive and correlational analyses were used to characterize responses. Qualitative content from open-ended survey questions was analyzed using the constant comparative method. RESULTS:Of 126 trainees, 42 (33%) completed the survey. All agreed with disclosing the hypothetical error presented in the vignette resulting in an SSE (100%), with rates falling for the MSE (95%) and NMSE (7%). There were no significant associations between disclosure agreement for the vignettes and trainee demographic features, knowledge of safety events, prior personal experiences with errors, and disclosure. Four themes that emerged from qualitative analysis of trainees' rationales for disclosure or nondisclosure of the vignette errors are harm, parental preferences, ethical principles, and anticipatory guidance. CONCLUSIONS:Trainees had high rates of disclosure for the vignette errors cases that depicted SSEs and MSEs but lower rates for NMSEs. Trainees considered the type and level of harm caused, parental preferences, upholding ethical principles, and the need for anticipatory guidance in their rationales for disclosure or nondisclosure of the vignette errors.

The use of planned oocyte cryopreservation for nonmedical need has been steadily increasing, especially since the experimental label on this procedure was lifted nearly 10 years ago. With this rise, patients' desires to postpone or conserve their reproductive potential have become increasingly nuanced, and the need for complex individualized counseling has grown. In addition, there are several ethical considerations, including risks, access, and patient comprehension that must be discussed with patients who are considering this procedure. In this review, we provide an in-depth discussion of these concepts, highlighting the need for individualized and comprehensive counseling that recognizes the gaps in knowledge that remains in this somewhat novel domain.

Although the Uniform Determination of Death Act (UDDA) has served as a model statute for 40 years, there is a growing recognition that the law must be updated. One issue being considered by the Uniform Law Commission's Drafting Committee to revise the UDDA is whether the text "all functions of the entire brain, including the brainstem" should be changed. Some argue that the absence of diabetes insipidus indicates that some brain functioning continues in many individuals who otherwise meet the "accepted medical standards" like the American Academy of Neurology's. The concern is that the legal criteria and the medical standards used to determine death by neurological criteria are not aligned. We argue for the revision of the UDDA to more accurately specify legal criteria which align with the medical standards: brain injury leading to permanent loss of a) the capacity for consciousness, b) the ability to breathe spontaneously, and c) brainstem reflexes. We term these criteria "neuro-respiratory criteria" and show that they are well-supported in the literature for physiological and social reasons justifying their use in the law.