Mark R. Mercurio

Ethical and policy issues in genetic testing and screening of children

The genetic testing and genetic screening of children are commonplace. Decisions about whether to offer genetic testing and screening should be driven by the best interest of the child. The growing literature on the psychosocial and clinical effects of such testing and screening can help inform best practices. This policy statement represents recommendations developed collaboratively by the American Academy of Pediatrics and the American College of Medical Genetics and Genomics with respect to many of the scenarios in which genetic testing and screening can occur.

Physicians' Refusal to Resuscitate at Borderline Gestational Age

Most neonatologists believe there is a minimal gestational age, below which it is appropriate to refuse to provide resuscitation or intensive care. Determination of this threshold should involve knowledge of the outcome data, but also an understanding of the potential for misuse of these data. In particular, there is a risk of deception, of the parents and of ourselves, due to the uncertainty of the true gestational age, and the “self-fulfilling prophecy” that may occur when a center refuses to try below a certain gestational age because they have had no survivors below that age. Finally, any refusal to treat requires ethical justification. Concepts such as futility and patients best interest should play a role in the determination of the gestational age threshold, applied in light of the datas inherent weaknesses.

Patient selection for neonatal extracorporeal membrane oxygenation: beyond severity of illness.

Objective:To explore how neonates with respiratory failure are selected for extracorporeal membrane oxygenation (ECMO) once severity of illness criteria are met, and to determine how conflicts between ECMO providers and parents over the initiation of ECMO are addressed.Study Design:A cross-sectional study was conducted using a data collection survey, which was sent to the directors of neonatal respiratory ECMO centers.Result:The lowest birth weight and gestational age at which respondents would consider placing a neonate on ECMO were frequently below recommended thresholds. There was wide variability in respondents’ willingness to place neonates on ECMO in the presence of conditions such as intraventricular hemorrhage and hypoxic ischemic encephalopathy. The number of respondents who would never seek to override parental refusal of ECMO was equal to the number who would always do so.Conclusion:Significant variability exists in the selection criteria for neonatal ECMO and in how conflicts with parents over the provision of ECMO are resolved.

Policy statement - Consent for emergency medical services for children and adolescents

Parental consent generally is required for the medical evaluation and treatment of minor children. However, children and adolescents might require evaluation of and treatment for emergency medical conditions in situations in which a parent or legal guardian is not available to provide consent or conditions under which an adolescent patient might possess the legal authority to provide consent. In general, a medical screening examination and any medical care necessary and likely to prevent imminent and significant harm to the pediatric patient with an emergency medical condition should not be withheld or delayed because of problems obtaining consent. The purpose of this policy statement is to provide guidance in those situations in which parental consent is not readily available, in which parental consent is not necessary, or in which parental refusal of consent places a child at risk of significant harm.

American academy of pediatrics policy statements on bioethics: summaries and commentaries: part 3.

1. Mark R. Mercurio, MD, MA* 2. Edwin N. Forman, MD* 3. Rosalind Ekman Ladd, PhD* 4. Marilyn A. Maxwell, MD* 5. Lainie Friedman Ross, MD, PhD* 6. Tomas J. Silber, MD, MAAS* 1. *On behalf of the American Academy of Pediatrics Section on Bioethics The American Academy of Pediatrics (AAP) has a strong and longstanding interest in the field of bioethics and periodically publishes policy statements pertaining to specific ethical questions relevant to pediatrics. The subjects addressed cover a wide range of topics, from parental refusal of immunization to the care of critically ill children. These policies initially are authored by the AAPs Committee on Bioethics and undergo extensive internal review by other committees prior to publication. This article is the third in a series of three intended to familiarize the reader with many of the AAP policies currently in place that address issues in bioethics. In this series, 16 policies published by the AAP are summarized, each followed by a brief commentary. The commentaries are intended to address, at least on a cursory level, some of the ethical principles underlying the policies. Some briefly point out possible alternative viewpoints. The policies referenced in this article represent the efforts of various committees and committee members over the years. Each of the summaries presented here, as well as the commentaries that follow, represent the work of an individual serving on the Executive Committee of the Section on Bioethics, as indicated at the beginning of each summary. Understandably, some of the wording of these summaries is taken directly from the published policies. When quotations are used within a summary and not referenced, it can be assumed that the quote is taken directly from the policy being summarized. For ease of use, the references for each policy are provided with each individual summary and commentary. Part 1 of this series reviews: (1) 1. Informed Consent, Parental Permission, and Assent in Pediatric Practice 2. Religious Objections to Medical Care 3. Responding to Parental Refusals of Immunization of Children 4. Sterilization of Minors With Developmental Disabilities 5. Human Embryo …

Betamethasone increases pulmonary compliance in part by surfactant-independent mechanisms in preterm rabbits.

ABSTRACT. Antenatal exposure to corticosteroids is known to increase the pulmonary compliance of preterm animals. We wished to determine whether this was due solely to alteration in lung surfactant content. Rabbit does were injected with either vehicle alone or betamethasone on days 25 and 26 of gestation. Fetuses were delivered at 27 days and given either 50% lactated Ringers or intratracheal natural surfactant prior to their first breath. Fetuses were mechanically ventilated at a tidal volume of 12 ml/kg for 60 min with periodic compliance measurements. Following ventilation an alveolar lavage was collected for phosphatidylcholine determination. Some fetuses did not undergo ventilation but had saline compliance studies instead. Fetuses given intratracheal surfactant had a higher dynamic compliance than fetuses exposed to antenatal corticosteroids (0.55 ± 0.01 versus 0.48 ± 0.02 ml/cm H2O/kg, respectively). Fetuses exposed to antenatal corticosteroids and given intratracheal surfactant had a dynamic compliance (0.66 ± 0.02) that was greater than those exposed to either single therapy. This was found despite an alveolar surfactant content equal to that in fetuses receiving intratracheal surfactant alone. Saline compliance at birth was significantly greater for fetuses exposed antenatally to steroids. These data imply the existence of a nonsurfactant mechanism by which antenatal corticosteroids increase fetal pulmonary compliance.

Ethical controversies in organ donation after circulatory death

The persistent mismatch between the supply of and need for transplantable organs has led to efforts to increase the supply, including controlled donation after circulatory death (DCD). Controlled DCD involves organ recovery after the planned withdrawal of life-sustaining treatment and the declaration of death according to the cardiorespiratory criteria. Two central ethical issues in DCD are when organ recovery can begin and how to manage conflicts of interests. The “dead donor rule” should be maintained, and donors in cases of DCD should only be declared dead after the permanent cessation of circulatory function. Permanence is generally established by a 2- to 5-minute waiting period. Given ongoing controversy over whether the cessation must also be irreversible, physicians should not be required to participate in DCD. Because the preparation for organ recovery in DCD begins before the declaration of death, there are potential conflicts between the donor’s and recipient’s interests. These conflicts can be managed in a variety of ways, including informed consent and separating the various participants’ roles. For example, informed consent should be sought for premortem interventions to improve organ viability, and organ procurement organization personnel and members of the transplant team should not be involved in the discontinuation of life-sustaining treatment or the declaration of death. It is also important to emphasize that potential donors in cases of DCD should receive integrated interdisciplinary palliative care, including sedation and analgesia.

Congenital Lobar Emphysema The Roles of CT and V/Q Scan

An infant with congenital lobar emphysema of the left upper lobe presented with unusually severe mediastinal shift and underwent computed tomography (CT) and radionuclide V/Q scans. The V/Q scan confirmed the non-functioning nature of the hyperinflated lobe while the CT scan depicted the abnormal anatomy as well as the normal morphologic characteristics of the remaining lung thus allowing for safe and appropriate surgical management.

The role of a pediatric ethics committee in the newborn intensive care unit

Institutional Ethics Committees are commonly available in hospitals with newborn intensive care units, and may serve as a valuable resource for staff and parents dealing with difficult ethical decisions. Many clinicians may be unaware of when the committee might be helpful, or how it functions. After a brief historical introduction, two cases are presented as illustrations of pediatric ethics committee function. The first involves consideration of cardiac surgery for an infant with ventricular septal defect and Trisomy 13. The second involves disagreement between staff and parents regarding possible provision of cardio-pulmonary resuscitation in a terminally ill newborn. Principles and considerations often brought to bear in committee deliberations are reviewed for each case. Neonatologists, staff and families should be aware of this potentially valuable resource, and are encouraged to use it for situations of moral distress, conflict resolution or ethical uncertainty.

Saving vs creating: perceptions of intensive care at different ages and the potential for injustice

Saving vs creating: perceptions of intensive care at different ages and the potential for injustice