Kathryn L. Weise

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.

The OHRP and SUPPORT

A group of medical ethicists and pediatricians asks for reconsideration of the recent Office for Human Research Protections decision about informed consent in SUPPORT.

Clinical report - Maternal-fetal intervention and fetal care centers

The past 2 decades have yielded profound advances in the fields of prenatal diagnosis and fetal intervention. Although fetal interventions are driven by a beneficence-based motivation to improve fetal and neonatal outcomes, advancement in fetal therapies raises ethical issues surrounding maternal autonomy and decision-making, concepts of innovation versus research, and organizational aspects within institutions in the development of fetal care centers. To safeguard the interests of both the pregnant woman and the fetus, the American College of Obstetricians and Gynecologists and the American Academy of Pediatrics make recommendations regarding informed consent, the role of research subject advocates and other independent advocates, the availability of support services, the multidisciplinary nature of fetal intervention teams, the oversight of centers, and the need to accumulate maternal and fetal outcome data.

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.

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.

Conflicts Between Religious or Spiritual Beliefs and Pediatric Care: Informed Refusal, Exemptions, and Public Funding

Although respect for parents’ decision-making authority is an important principle, pediatricians should report suspected cases of medical neglect, and the state should, at times, intervene to require medical treatment of children. Some parents’ reasons for refusing medical treatment are based on their religious or spiritual beliefs. In cases in which treatment is likely to prevent death or serious disability or relieve severe pain, children’s health and future autonomy should be protected. Because religious exemptions to child abuse and neglect laws do not equally protect all children and may harm some children by causing confusion about the duty to provide medical treatment, these exemptions should be repealed. Furthermore, public health care funds should not cover alternative unproven religious or spiritual healing practices. Such payments may inappropriately legitimize these practices as appropriate medical treatment.

Exploring Accountability of Clinical Ethics Consultants: Practice and Training Implications

Clinical ethics consultants represent a multidisciplinary group of scholars and practitioners with varied training backgrounds, who are integrated into a medical environment to assist in the provision of ethically supportable care. Little has been written about the degree to which such consultants are accountable for the patient care outcome of the advice given. We propose a model for examining degrees of internally motivated accountability that range from restricted to unbounded accountability, and support balanced accountability as a goal for practice. Finally, we explore implications of this model for training of clinical ethics consultants from diverse academic backgrounds, including those disciplines that do not have a formal code of ethics relating to clinical practice.

Human Embryonic Stem Cell (hESC) and Human Embryo Research

Human embryonic stem cell research has emerged as an important platform for the understanding and treatment of pediatric diseases. From its inception, however, it has raised ethical concerns based not on the use of stem cells themselves but on objections to the source of the cells—specifically, the destruction of preimplantation human embryos. Despite differences in public opinion on this issue, a large majority of the public supports continued research using embryonic stem cells. Given the possible substantial benefit of stem cell research on child health and development, the American Academy of Pediatrics believes that funding and oversight for human embryo and embryonic stem cell research should continue.

Not just little adults: a review of 102 paediatric ethics consultations

The American Academy of Pediatrics statement on institutional ethics committees highlights the importance of paediatric ethics consultation. However, little has been published on actual experience with ethics consultation in paediatrics. The objective of this study was to review and describe topics covered by a large retrospective sample of clinical ethics consultations in paediatric medicine.

Becoming a Competent Ethics Consultant: Up to Code?

defined differently in different settings, or defined in terms of the CEC model adopted in a given case—before the code of ethics can be sufficiently elaborated to serve as a real-world guide. I expect that the “integrity” portion of this code (except for the bits that seem really to deal with conflicting interests), like the “justice” portion, will see little use. Whether the other portions of the code become useful will depend in part on whether a practical means for their elaboration and application can be set up. Perhaps, following the lead of many professional associations, the American Society for Bioethics and Humanities (ASBH) could formally establish an ethics committee to apply the provisions of the code to particular cases, and to elaborate a “common law” of code interpretation. Whether the code obtains community sanction may also depend upon whether CEC becomes central enough in health care decision making to become the target of litigation, as institutional review boards (IRBs) have begun to be. And finally, it may depend upon whether the models of CEC can become sufficiently standardized that the duties of consultants (whether as agents or as neutrals) can be seen to flow from them in a consistent, predictable fashion. One day, perhaps, fat, annotated versions of this code may sit on the shelves of medical malpractice attorneys and human resources officers and hospital compliance officers everywhere. If that day arrives, CEC will have professionalized. &