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Bioethicists have scrupulously defended patients' privacy and autonomy in medical care settings; they have not alwyas been taken the same care in their own work. [ABSTRACT FROM AUTHOR]

Billions of people use social media, including many patients, families, and providers. As social media has evolved, so have the challenges users face when choosing to share or view content. These challenges are even more complex when providers care for patients and families who post publicly about their experience in the medical system, especially when they have many followers. In this Ethics Rounds, we present a case of a resident physician caring for a medically complex child whose parent has hundreds of thousands of followers on her social media accounts where she posts details of her child's medical experience. The resident is considering viewing the parent's posts. An ethicist, a family advocate, and a pediatric resident provide commentaries. The first discusses issues of privacy, influencer culture, and decision-making. The second addresses communication and the difficulties families face as they interact with the medical system. The third discusses outdated policies and risks to the therapeutic relationship. The commentators generally agree that it is preferable for providers to discuss their concerns with patients or parents/guardians directly rather than view their social media surreptitiously. Although there may be some benefits to viewing someone's posts, such as gaining a better understanding of their life at home, it would be best for the provider to view them with the patient/parent to allow them to provide context., (Copyright © 2023 by the American Academy of Pediatrics.)

Objectives: To report the prevalence of adverse events in children undergoing apnea testing as part of the determination of death by neurologic criteria (DNC)., Design: Single-center, retrospective study., Setting: Academic children's hospital that is a Level I Trauma Center., Patients: All children who underwent apnea testing to determine DNC from July 2013 to June 2020., Interventions: None., Measurements and Main Results: We abstracted the medical history, blood gases, ventilator settings, blood pressures, vasoactive infusions, intracranial pressures, chest radiographs, and echocardiograms for all apnea tests as well as any ancillary test. Adverse events were defined as hypotension, hypoxia, pneumothorax, arrhythmia, intracranial hypertension, and cardiac arrest. Fifty-eight patients had 105 apnea tests. Adverse events occurred in 21 of 105 apnea tests (20%), the most common being hypotension (15/105 [14%]) and hypoxia (4/105 [4%]). Five of 21 apnea tests (24%) with adverse events were terminated prematurely (three for hypoxia, one for hypotension, and one for both hypoxia and hypotension) but the patients did not require persistent escalation in care. In the other 16 of 21 apnea tests (76%) with adverse events, clinical changes were transient and managed by titrating vasoactive infusions or completing the apnea test., Conclusions: In our center, 20% of all apnea tests were associated with adverse events. Only 5% of all apnea tests required premature termination and the remaining 15% were completed and the adverse events resolved with medical care., Competing Interests: The authors have disclosed that they do not have any potential conflicts of interest., (Copyright © 2023 by the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.)

Objectives: To characterize the prevalence and content of pediatric triage policies., Methods: We surveyed and solicited policies from U.S. hospitals with pediatric intensive care units. Policies were analyzed using qualitative methods and coded by 2 investigators., Results: Thirty-four of 120 institutions (28%) responded. Twenty-five (74%) were freestanding children's hospitals and 9 (26%) were hospitals within a hospital. Nine (26%) had approved policies, 9 (26%) had draft policies, 5 (14%) were developing policies, and 7 (20%) did not have policies. Nineteen (68%) institutions shared their approved or draft policy. Eight (42%) of those policies included neonates. The polices identified 0 to 5 (median 2) factors to prioritize patients. The most common factors were short- (17, 90%) and long- (14, 74%) term predicted mortality. Pediatric scoring systems included Pediatric Logistic Organ Dysfunction-2 (12, 63%) and Score for Neonatal Acute Physiology and Perinatal Extensions-II (4, 21%). Thirteen (68%) policies described a formal algorithm. The most common tiebreakers were random/lottery (10, 71%) and life cycles (9, 64%). The majority (15, 79%) of policies specified the roles of triage team members and 13 (68%) precluded those participating in patient care from making triage decisions., Conclusions: While many institutions still do not have pediatric triage policies, there appears to be a trend among those with policies to utilize a formal algorithm that focuses on short- and long-term predicted mortality and that incorporates age-appropriate scoring systems. Additional work is needed to expand access to pediatric-specific policies, to validate scoring systems, and to address health disparities.

Background: While employers are increasingly considering and implementing COVID-19 vaccination requirements, little is known about the reasons offered by employees seeking religious exemptions. Methods: We conducted a mixed methods analysis of all the requests for religious exemptions submitted during the initial implementation of a COVID-19 vaccination requirement at a single academic medical center in the United States. Results: Five hundred sixty-five (3.4%) employees requested religious exemptions. At least 305 (54.0%) requesters had job titles suggesting that they had direct patient contact. Four hundred ninety-nine (88.3%) of requesters self-identified as Christian, of whom 120 (21.2%) identified as Roman Catholic. Requesters offered 0 to 8 (mean 2.7) categories of reasons for their request. The most frequently stated reasons pertained to the use of fetal cell lines in vaccine development and manufacturing (382, 67.6%), interest in maintaining purity (221, 39.1%), or belief in divine healing (172, 30.4%). Some requesters also volunteered evidence of the sincerity of their beliefs including examples of their religious practices (116, 20.5%), other practices (66, 11.7%), and emotional states (32, 5.7%). One hundred fifty-two applications (26.9%) contained text copied without attribution, primarily from sample religious exemption request letters available on the Internet. Conclusions: Most requesters focused on the use of fetal cell lines in the development or manufacturing of the vaccines as the justification for their request. The development of vaccines that are not reliant on fetal cell lines may increase vaccination rates. Understanding reasons for religious exemption requests may inform vaccine education and vaccination policies.

Congenital cytomegalovirus (cCMV) affects approximately 1 in every 200 US infants and can be associated with long-term neurodevelopmental sequelae, including sensorineural hearing loss, cerebral palsy, and intellectual disability. As cCMV is infrequently diagnosed based on clinical suspicion alone, newborn cCMV screening programs have been gaining traction, especially hearing-targeted programs which only test infants who fail their newborn hearing screen. cCMV screening programs raise unique ethical dilemmas of both under- and over-diagnosis of cCMV. In this Ethics Rounds, we present a case in which the parents of a child with symptomatic cCMV that was not recognized until 4 years of age urge the birth hospital to implement a cCMV screening program. We then ask a parent-clinician, a medical ethicist and pediatrician, and a primary care pediatrician to comment on how they would advise the hospital administration and consider the ethical and clinical implications of a cCMV screening program. The commentaries herein arrive at differing conclusions about cCMV screening. The first highlights the developmental advantages of early cCMV detection, supporting a broad approach to treatment beyond antiviral medication alone. The second explores cCMV screening from the perspective of newborn screening as a public health program, noting shortcomings in available testing platforms, and raising concerns about overdiagnosis and overtreatment. The final commentary challenges the risks of undue parental anxiety and vulnerable child syndrome as a barrier to screening, instead considering cCMV screening as a controlled opportunity to understand and support the experiences of affected children and their families., (Copyright © 2022 by the American Academy of Pediatrics.)

The US Food and Drug Administration (FDA) approval of the biologics license application for the Pfizer-BioNTech coronavirus disease 2019 vaccine (Comirnaty) on August 23, 2021, opened the door to the off-label vaccination of children younger than the age range currently covered by either the biologics license application (16 years old and older) or the emergency use authorization (12 to 15 years old). Although prescribing medications at doses, for conditions, or in populations other than those approved by the FDA is generally legal and is common in pediatrics, the FDA, the Centers for Disease Control and Prevention, and the American Academy of Pediatrics have recommended against off-label prescription of the coronavirus disease 2019 vaccine. Several commentaries consider a case in which parents ask their child's pediatrician to prescribe the vaccine for their 11-year-old with special health care needs before approval or authorization in her age group. The first commentary considers the potential benefits and risks to the patient, as well as to the family, the provider, and society, emphasizing the unknown risks in younger patients and the need for adequate informed consent. The second commentary describes an algorithm and principles for evaluating off-label prescribing and argues that the current benefits of prescribing Comirnaty off label to children <12 do not outweigh the risks. The third commentary addresses ethical and legal issues, ultimately calling on federal agencies to remove legal barriers to making the vaccine available to children in age groups that currently lack authorization., Competing Interests: FINANCIAL DISCLOSURES: The authors have indicated they have no financial disclosures relevant to this article to disclose., (Copyright © 2022 by the American Academy of Pediatrics.)

During the coronavirus disease 2019 (COVID-19) pandemic, many hospitals have added COVID-19-specific visitor restrictions to their routine visitor restrictions. These additional visitor restrictions are designed to reduce viral transmission, protect patients and staff, and conserve personal protective equipment. They typically exempt patients with disabilities and those who are dying. Consistent application of these policies may, however, be inequitable. We present the case of a single mother seeking an individual exemption to both a routine and a COVID-19 specific visitor restriction. One commentator focuses on the importance of clear and transparent processes for considering requests for exceptions. The other argues that disproportionate burdens may be mitigated in other ways and the policy maintained., Competing Interests: POTENTIAL CONFLICTS OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2021 by the American Academy of Pediatrics.)

Nonpharmaceutical interventions to minimize the transmission of the severe acute respiratory syndrome coronavirus 2 are necessary because we currently lack a vaccine or specific treatments. Healthcare facilities have adopted visitor restrictions and masking requirements. These interventions should be evaluated as public health measures, focusing on their efficacy, the availability of less-restrictive alternatives, and the minimization of the burdens and their balance with the benefits. These interventions, as well as exceptions, can be justified by the same analysis. For example, visitor restrictions are sound, as are exceptions for women in labor, adults with disabilities, minor children, and individuals who are dying. In implementing these policies, specific rules are preferable to general principles because they are more efficient and reduce possible bias. There should, however, be appeal mechanisms and retrospective review processes. Evaluating requests for medical exemptions to masking requirements is particularly difficult, given the prevalence of nonmedical objections, false claims of medical exemptions, and a lack of objective medical criteria. Requiring written statements by licensed healthcare providers that undergo subsequent substantive review may therefore be justified., (Copyright 2021 The Journal of Clinical Ethics. All rights reserved.)

The dramatic increases of opioid use and misuse in the past 15 years have resulted in a focus on the responsible and judicious use of opioids. In this Ethics Rounds, the commentators analyze the case of a 16-year-old girl with lymphoma and opioid misuse whose caregiver may have diverted her opioids. She is now at the end of life and prefers to die at home. The commentators, oncologists, palliative care providers, ethicists, and a medical student agree that supporting the patient's goals and practicing good opioid stewardship are not incompatible. They identify additional information that would be required to analyze the case more fully such as the nature of the evidence for misuse and diversion and whether bias inadvertently contributed to these concerns. They agree that multimodal analgesia, including but not limited to opioids, is important. Safeguards could include a contract, directly observed therapy, and/or urine drug screens. Supervision or removal of a caregiver diverting medication or admission of the patient misusing medications would be alternatives if the initial plan was unsuccessful. Such patient-centered care requires well-developed substance misuse treatment, pain management, and home hospice that are adequately reimbursed., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2021 by the American Academy of Pediatrics.)

Competing Interests: Declaration of Competing Interest The authors declare no conflicts of interest.

Background: The coronavirus disease 2019 pandemic has or threatens to overwhelm health care systems. Many institutions are developing ventilator triage policies., Objective: To characterize the development of ventilator triage policies and compare policy content., Design: Survey and mixed-methods content analysis., Setting: North American hospitals associated with members of the Association of Bioethics Program Directors., Participants: Program directors., Measurements: Characteristics of institutions and policies, including triage criteria and triage committee membership., Results: Sixty-seven program directors responded (response rate, 91.8%); 36 (53.7%) hospitals did not yet have a policy, and 7 (10.4%) hospitals' policies could not be shared. The 29 institutions providing policies were relatively evenly distributed among the 4 U.S. geographic regions (range, 5 to 9 policies per region). Among the 26 unique policies analyzed, 3 (11.3%) were produced by state health departments. The most frequently cited triage criteria were benefit (25 policies [96.2%]), need (14 [53.8%]), age (13 [50.0%]), conservation of resources (10 [38.5%]), and lottery (9 [34.6%]). Twenty-one (80.8%) policies use scoring systems, and 20 of these (95.2%) use a version of the Sequential Organ Failure Assessment score. Among the policies that specify the triage team's composition (23 [88.5%]), all require or recommend a physician member, 20 (87.0%) a nurse, 16 (69.6%) an ethicist, 8 (34.8%) a chaplain, and 8 (34.8%) a respiratory therapist. Thirteen (50.0% of all policies) require or recommend that those making triage decisions not be involved in direct patient care, but only 2 (7.7%) require that their decisions be blinded to ethically irrelevant considerations., Limitation: The results may not be generalizable to institutions without academic bioethics programs., Conclusion: Over one half of respondents did not have ventilator triage policies. Policies have substantial heterogeneity, and many omit guidance on fair implementation., Primary Funding Source: None.

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

In an article in this issue of the Hastings Center Report, Aaron Wightman and his coauthors attempt to address health care providers' moral distress about acceding to parents' requests to provide life-sustaining medical treatment to children who have profound cognitive disabilities. They propose combining John Arras's relational potential standard and care ethics, and they argue that the capacity for caring relationships can provide an independent moral justification for honoring such requests. This combination is, however, unstable. Wightman et al.'s language of potential and capacity opens the possibility of substantial misinterpretation. They rely on epistemological and prognostic uncertainty to argue that reciprocity and participation may be present in the parent-child relationship even when the child's engagement cannot be observed. The terminology suggests that these are characteristics that can be gained or lost rather than characteristics of being born within certain social practices. In contrast, Eva Feder Kittay illuminates family membership as an important social relation. Her articulation of the independent moral value of parenting stands on its own without being conjoined to Arras's position., (© 2019 The Hastings Center.)

Objectives: Discuss the ethical issues in the management of postoperative hemorrhage in pediatric patients whose parents are Jehovah's Witnesses (JW) and 2) Describe a framework for shared decision making in this population., Methods: A recall review of pediatric otolaryngology patients with parents of the JW faith and postoperative hemorrhage was performed over a year long period at a single institution. The literature on transfusions for JW minors was reviewed., Results: Two patients were identified. The first patient had a severe post-tonsillectomy hemorrhage requiring multiple emergency operative interventions. The child developed a hemoglobin of 5.2 g/dl and received an emergent transfusion against parents' wishes. The child subsequently did not require further intervention. The second patient hemorrhaged after a supraglottoplasty and was administered erythropoietin and iron infusion but did not require transfusion (hemoglobin nadir 7.9 g/dl). In both cases hematology was consulted, and extensive discussion with the families and the JW Hospital Liaison Committee occurred., Conclusions: The risks of hemorrhage should be discussed with JW parents of patients undergoing even routine otolaryngologic surgery. In these cases, early shared decision making with family, the JW Hospital Liaison committee, and hematology was pursued regarding mutually acceptable interventions. Aggressive non-transfusion based resuscitation was carried out to minimize the likelihood of transfusion. In the first case, danger to the patient's life eventually necessitated transfusion in accordance with the patient's best interest and previous case law. A defined framework involving all stake-holders, including Pastoral Care, in the event of postoperative hemorrhage is critical., (Copyright © 2018. Published by Elsevier B.V.)

Background: Youth in protective custody (e.g.. foster care) are at higher risk for poorer physical and mental health outcomes compared with those who are not in custody. These differences may be due in part to the lack of research on the population to create evidence-based recommendations for health care delivery. A potential contributor to this lack of research is difficulties in obtaining informed consent for empirical studies in this population. The objective of this study was to describe the approaches to obtaining informed consent in minimal risk studies of foster youth and provide recommendations for future requirements., Methods: We conducted a systematic review of the literature to characterize the informed consent approaches in published minimal risk research involving youth in foster care. We searched PubMed, CINAHL, PsychINFO, Embase, ERIC, Scopus, and EBMR. Inclusion criteria were: studies conducted in the United States, included current foster youth, minimal risk, peer reviewed, and published in English. Full text was reviewed, and individuals required to consent and assent were extracted., Results: Forty-nine publications from 33 studies were identified. Studies required 0 to 3 individuals to consent. Individuals required to give consent included case workers (16, 48%), foster caregivers (12, 36%), biological parents (7, 21%), judges (5, 15%), and guardian ad litems (2, 6%). Twenty-nine (88%) studies required the youth's assent. The studies used 14 different combinations of individuals. One (3%) study utilized a waiver of consent., Conclusions: There is no consistent approach for obtaining informed consent for foster youth to participate in minimal risk research. Consent should ideally involve individuals with legal authority and knowledge of the individual youth's interests and should not be burdensome. Consensus regarding consent requirements may facilitate research involving foster youth.

Background: The factors influencing parents' willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents' willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness., Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of three consent and data-sharing scenarios., Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50-59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one's child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity., Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks.

Introduction: Classifying the ethical issues in clinical ethics consultations is important to clinical practice and scholarship. We conducted a systematic review to characterize the typologies used to analyze clinical ethics consultations., Methods: We identified empirical studies of clinical ethics consultation that report types of ethical issues using PubMed. We screened these articles based on their titles and abstracts, and then by a review of their full text. We extracted study characteristics and typologies and coded the typologies., Results: We reviewed 438 articles; 30 of the articles fulfilled our inclusion criteria. We identified 27 unique typologies. Each typology contained five to 47 categories (mean was 18). The most common categories were DNAR (do-not-attempt-resuscitation) orders (19 of the 27 typologies, or 70 percent), capacity (18 of the typologies, or 67 percent), withholding (18 of the typologies, or 67 percent), withdrawing (17 of the typologies, or 63 percent), and surrogate or proxy (16 of the typologies, or 59 percent). Only seven (26 percent) of the typologies contained all five of the most common categories. The typologies we used to characterize clinical ethics consultation exhibit significant heterogeneity and several conceptual limitations. A common typology is needed whose development may require multi-institutional collaboration and could be facilitated by professional organizations., (Copyright 2018 The Journal of Clinical Ethics. All rights reserved.)

Many academic medical centers are seeking to attract patients from outside their historical catchment areas for economic and programmatic reasons, and patients are traveling for treatment that is unavailable, of poorer quality, or more expensive at home. Treatment of these patients raises a number of ethical issues including whether they may be given priority in scheduling outpatient follow-up appointments in order to reduce the period of time they are away from home. Granting them priority is potentially unjust because medical treatment is generally allocated based on medical need and resource utilization, and then on a first-come, first-served basis. While it is difficult to compare the opportunity cost of waiting for an appointment to different patients, nonresident patients incur higher expenditures for travel, room, and board than resident patients. Giving them priority in scheduling to reduce these costs may be justifiable. Preferentially scheduling nonresident patients may also indirectly benefit resident patients consistent with Rawls's difference principle. This potential justification, however, rests on several empirical claims that should be demonstrated. In addition to reducing resident patients' waiting times, medical centers should not prioritize nonresident patients over resident patients with more urgent medical needs. There is, therefore, a limited and circumscribed justification for prioritizing nonresident patients in scheduling follow-up appointments., (Copyright 2017 The Journal of Clinical Ethics. All rights reserved.)

Individuals participating in biobanks and other large research projects are increasingly asked to provide broad consent for open-ended research use and widespread sharing of their biosamples and data. We assessed willingness to participate in a biobank using different consent and data sharing models, hypothesizing that willingness would be higher under more restrictive scenarios. Perceived benefits, concerns, and information needs were also assessed. In this experimental survey, individuals from 11 US healthcare systems in the Electronic Medical Records and Genomics (eMERGE) Network were randomly allocated to one of three hypothetical scenarios: tiered consent and controlled data sharing; broad consent and controlled data sharing; or broad consent and open data sharing. Of 82,328 eligible individuals, exactly 13,000 (15.8%) completed the survey. Overall, 66% (95% CI: 63%-69%) of population-weighted respondents stated they would be willing to participate in a biobank; willingness and attitudes did not differ between respondents in the three scenarios. Willingness to participate was associated with self-identified white race, higher educational attainment, lower religiosity, perceiving more research benefits, fewer concerns, and fewer information needs. Most (86%, CI: 84%-87%) participants would want to know what would happen if a researcher misused their health information; fewer (51%, CI: 47%-55%) would worry about their privacy. The concern that the use of broad consent and open data sharing could adversely affect participant recruitment is not supported by these findings. Addressing potential participants' concerns and information needs and building trust and relationships with communities may increase acceptance of broad consent and wide data sharing in biobank research., (Copyright © 2017 American Society of Human Genetics. All rights reserved.)