Why is it hard to make progress in assessing children’s decision-making competence?

Abstract

BackgroundFor decades, the discussion on children’s competence to consent to medical issues has concentrated around normative concerns, with little progress in clinical practices. Decision-making competence is an important condition in the informed consent model. In pediatrics, clinicians need to strike a proper balance in order to both protect children’s interests when they are not fully able to do so themselves and to respect their autonomy when they are. Children’s competence to consent, however, is currently not assessed in a standardized way. Moreover, the correlation between competence to give informed consent and age in children has never been systematically investigated, nor do we know which factors exactly contribute to children’s competence.This article aims at identifying these gaps in knowledge and suggests options for dealing with the obstacles in empirical research in order to advance policies and practices regarding children’s medical decision-making competence.DiscussionUnderstanding children’s competency is hampered by the law. Legislative regulations concerning competency are established on a strong presumption that persons older than a certain age are competent, whereas younger persons are not. Furthermore, a number of contextual factors are believed to be of influence on a child’s decision-making competence: the developmental stage of children, the influence of parents and peers, the quality of information provision, life experience, the type of medical decision, and so on. Ostensibly, these diverse and extensive barriers hinder any form of advancement in this conflicted area. Addressing these obstacles encourages the discussion on children’s competency, in which the most prominent question concerns the lack of a clear operationalization of children’s competence to consent. Empirical data are needed to substantiate the discussion.SummaryThe empirical approach offers an opportunity to give direction to the debate. Recommendations for future research include: studying a standardized assessment instrument covering all four relevant dimensions of competence (understanding, reasoning, appreciation, expressing a choice), including a study population of children covering the full age range of 7 to 18 years, improving information provision, and assessing relevant contextual data.

A randomized study of a method for optimizing adolescent assent to biomedical research

“…Important questions remain unanswered, particularly those regarding child and adolescent competence to assent and how to best respect the autonomy of children and adolescents to assent (Baines 2011, Hein et al 2015, Kodish 2003). …”

Transplant Medicine in China: Need for Transparency and International Scrutiny Remains

“…Various media interviews in the first half of 2015 2, 8 added further confusion to the legal definition of an organ donor in China. Remarkably, death row prisoners had the right to donate organs, and these should be considered similar to organ donations from citizens 2, thereby allowing their inclusion in the public organ donation system.…”

“…Remarkably, death row prisoners had the right to donate organs, and these should be considered similar to organ donations from citizens 2, thereby allowing their inclusion in the public organ donation system. This underlying vagueness has been described as a “semantic trick” 9 in the medical press.…”

“…Shortly following the publication of our paper, China announced the abolishment of the procurement of organs from executed prisoners starting from January 2015 and replacing them with voluntary organ donations of deceased citizens. The reaction within the medical community was divided 2, with some applauding the development; others reserved judgment without objective proof of cessation.…”

Recherche en pédiatrie (2) : le consentement en pratique

“…Toutes les signatures doivent obligatoirement être obtenues avant tout acte lié à la recherche. L'assentiment du mineur doit aussi être recherché, tenant compte de son niveau de compréhension, et de raisonnement, et de sa capacité à exprimer un choix qui lui est propre [16][17][18]. Sa décision doit être respectée, qu'il s'agisse d'un accord ou d'un refus de participation.…”