This paper concentrates on controversies about children's consent, and reviews how children's changing status as competent decision makers about healthcare and research has gradually gained greater respect. Criteria for competence have moved from age towards individual children's experience and understanding. Uncertain and shifting concepts of competence and its identification with adulthood and childhood are examined, together with levels of decision-making and models for assessing children's competence. Risks and uncertainties, methods of calculating the frequency and severity of risks, the concept of 'therapeutic research' and problems of expanding consent beyond its remit are considered. The paper ends by considering how strengths and limitations in children's status and capacities to consent can be mirrored in researchers' and practitioners' own status and capacities. Examples are drawn from empirical research studies about decision-making in healthcare and research involving children in the UK.
The interviews showed that children's experiences of diabetes tended to enable them to make informed, "wise" decisions in their own best interests, even at a young age. They achieved a complicated balance between the sometimes competing goals of social health "being normal" and physiological health in controlling glycaemia. Their competence supports approaches in children's rights and in policy makers' aims that people with diabetes--including children--gain more knowledge, skills, and responsibility for their own care in partnership with healthcare professionals. Consent is usually considered in relation to surgery; however the children showed how they constantly dealt with decisions about consent or refusal, compliance with, or resistance to their prescribed treatment. Their health depends on their informed commitment to medical guidance; more research is needed about the daily realities of children's committed and responsible co-management of their chronic illness.
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