![]() The issue of disclosure of surgeon-specific outcome data has been addressed recently in the surgical literature. 12 During disclosure to the patient and/or the surrogate regarding treatment options, many believe it is important for the physician to disclose his or her or the facility’s own experience with the proposed intervention and periprocedural complications. Disclosure of risks may differ between physicians in community and academic settings, between younger and older physicians, or among those who perform minimally invasive compared with open procedures. The content of the informed consent discussion is closely linked with professional experience. As we will discuss further, in pediatric care we often need to expand our understanding of autonomy to recognize the autonomy of the family unit, allowing respect for both the privacy of the family unit, within limits, and parental authority and responsibility for medical decision-making. 2 However, the goals of the informed consent process (protecting and promoting health-related interests and incorporating the patient and/or the family in health care decision-making) are similar in the pediatric and adult population and are grounded by the same ethical principles of beneficence, justice, and respect for autonomy. ![]() A reliance on individual liberties and autonomy in the pediatric patient is not realistic or legally accepted, so parents or other surrogates provide “informed permission” for diagnosis and treatment, with the assent of the child as developmentally appropriate. 8, 9Īppropriate decisional capacity and legal empowerment are the determinants of decision-making authority in medicine. This long-standing American emphasis on individualism correlated with an increased interest in and attention to the issue of informed consent. The historical shift in US medical practice from paternalism to respect for individual autonomy was shaped by events in the 20th century, such as the distrust of the medical profession after the Nuremburg trial of Nazi doctors, widespread publicity regarding research ethics violations, the turbulence of the civil rights and women’s rights movements, and the long-standing American characteristic of individualism. 7 As a brief description, informed consent incorporates 2 duties: disclosing information to patients and their surrogates and obtaining legal authorization before undertaking any interventions. The support for informed consent in ethical theory is most commonly found in the concept of autonomy, the right of an autonomous agent to make decisions as guided by his or her own reason. The current concept of informed consent in medical practice has roots within both ethical theory and law. The purpose of this technical report is to provide a firm grounding of the concept of informed consent, addressing both the legal and philosophical roots, to provide information on a variety of standards applicable for decision-making by surrogates for pediatric patients and to discuss how issues of assent, refusal, and consent affect the care of children and adolescents in a variety of clinical and research settings. ![]() 4, – 6 The discordance between current clinical practice and previously published guidance may reflect the gradual evolution of change within the culture of medicine or perhaps suggests a need to build on the discussion of informed consent, assent, and refusal for children and adolescents. Despite the long-standing stance of the AAP that older children and adolescents should be involved in the medical decision-making and consent process, there still has not been widespread understanding and endorsement among practitioners of the concept of pediatric assent or refusal. Although some aspects of decision-making in pediatrics are evolving in response to changes in information technology, scientific discoveries, and legal rulings, recent reports have noted that change can be slow.
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