For 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. (shrink)

Adolescents present a puzzle. There are foundational unclarities about how they should be regarded as decision-makers. Although superficially adolescents may appear to have mature decisional capacity, their decision-making is in many ways unlike that of adults. Despite this seemingly obvious fact, a concern for the claims of autonomy has led to the development of the legal doctrine of the mature minor. This legal construct considers adolescents, as far as possible, as equivalent to adults for the purpose of medical decision-making. The (...) movement to support independent decision-making by adolescents through providing information to them and securing their consent apart from their parents is encouraged by those legal understandings that hold that unemancipated minors should generally be considered as possessing effective decisional capacity. Such legal structures, however, do not adequately take account of the wide variations in adolescent capacities, the immaturity of most adolescent decision-makers, or the important contributions made by parents to the development of their adolescents through parental partnering in the adolescent’s decision-making. The data available indicate that in general adolescents should be regarded as apprentice decision-makers who should make decisions in collaboration with their parents until at least the age of 18. Steps should not be taken pre-emptively to isolate adolescents from the guidance of their parents. As a general rule, what Piker has referred to as “collaborative paternalism” appears most likely both to protect adolescents from their own untoward choices, while also very importantly helping them with parental guidance to develop into mature decision-makers with the capacity to make medical choices on their own. (shrink)

Das ethische Prinzip des Respekts vor der Autonomie des Patienten/Probanden hat in der modernen Medizin mittlerweile weltweit Bedeutung erlangt. Die Betonung der Autonomie des Patienten und Probanden in allen in der letzten Zeit verabschiedeten internationalen Deklarationen gibt dieser Tendenz unmissverständlich Ausdruck. Doch wenngleich diese Entwicklung unstrittig positiv ist, wirft sie dennoch eine Reihe von Fragen auf, die mit der Kodifizierung, Interpretation, Reichweite und Anwendung dieses universalen Prinzips verbunden sind. Die Antworten auf diese Fragen entscheiden darüber, ob Autonomie als hilfreiches, emanzipatorisches (...) oder als überforderndes, gar hegemoniales Prinzip begriffen wird. Diese normativen Probleme werden anhand von Beispielen aus der globalen Medizinethik verdeutlicht. Was in modernen Gesellschaften als Autonomie bezeichnet und für die Praxis fruchtbar gemacht wird, ist als ein soziales Konstrukt zu verstehen, nicht im Sinne einer Schimäre, sondern im Sinne einer soziokulturellen Leistung, die auf komplexen, historisch gewachsenen und kulturell geprägten Interaktionen von Gesellschaften, Institutionen und Individuen beruht. (shrink)

Gender dysphoria is a clinically significant incongruence between expressed gender and assigned gender, with rapidly growing prevalence among children. The UK High Court recently conducted a judicial review regarding the service provision at a youth-focussed gender identity clinic in Tavistock. The high court adjudged it ‘highly unlikely’ that under-13s, and ‘doubtful’ that 14–15 years old, can be competent to consent to puberty blocker therapy for GD. They based their reasoning on the limited evidence regarding efficacy, the likelihood of progressing to (...) cross-sex hormone therapy and the ‘life-changing consequences’ of puberty blockers. In this article, I offer two concurrent arguments to dispute their reasoning. First, I argue that minors can be competent to consent to puberty blockers for GD, because the decision to undergo puberty blocker therapy is no more complex or far-reaching than other medical decisions that we accept a child should be able to make. Second, I argue that—irrespective of competence—such legal restriction for all children fundamentally contradicts the central ethical tenet of child healthcare: best interests. For these two reasons, the high court should not restrict access to puberty blockers for competent GD children. (shrink)

BackgroundFor many decades, the debate on children’s competence to give informed consent in medical settings concentrated on ethical and legal aspects, with little empirical underpinnings. Recently, data from empirical research became available to advance the discussion. It was shown that children’s competence to consent to clinical research could be accurately assessed by the modified MacArthur Competence Assessment Tool for Clinical Research. Age limits for children to be deemed competent to decide on research participation have been studied: generally children of 11.2 (...) years and above were decision-making competent, while children of 9.6 years and younger were not. Age was pointed out to be the key determining factor in children’s competence. In this article we reflect on policy implications of these findings, considering legal, ethical, developmental and clinical perspectives.DiscussionAlthough assessment of children’s competence has a normative character, ethics, law and clinical practice can benefit from research data. The findings may help to do justice to the capacities children possess and challenges they may face when deciding about treatment and research options. We discuss advantages and drawbacks of standardized competence assessment in children on a case-by-case basis compared to application of a fixed age limit, and conclude that a selective implementation of case-by-case competence assessment in specific populations is preferable. We recommend the implementation of age limits based on empirical evidence. Furthermore, we elaborate on a suitable model for informed consent involving children and parents that would do justice to developmental aspects of children and the specific characteristics of the parent-child dyad.SummaryPrevious research outcomes showed that children’s medical decision-making capacities could be operationalized into a standardized assessment instrument. Recommendations for policies include a dual consent procedure, including both child as well as parents, for children from the age of 12 until they reach majority. For children between 10 and 12 years of age, and in case of children older than 12 years in special research populations of mentally compromised patients, we suggest a case-by-case assessment of children’s competence to consent. Since such a dual consent procedure is fundamentally different from a procedure of parental permission and child assent, and would imply a considerable shift regarding some current legislations, practical implications are elaborated. (shrink)