As a study involving diabetes care demonstrates, children sometimes have a much more sophisticated capacity for taking charge of their own health care decisions than is usually recognized in bioethics. Protecting these children from their disease means involving them in their treatment as much as possible, helping them to understand it and take responsibility for it so that they can navigate the multitude of daily decisions that become part of the diabetes medical regimen.
Philosophy, however abstract and analytical it is, can be only as sound as the social evidence and theories on which it relies. Bioethics is still dominated, though, by outdated Piagetian age-stage theories of child development that tend to emphasize children's ignorance, inexperience, and inability to make truly informed autonomous decisions, as if the mind and conscience grow as slowly as the body.1 A few years ago, for instance, a review of literature on informed consent, published in these pages, included no examples of studies involving people less than eighteen years of age.2 If, as Locke and Kant held, children are prerational and premoral, like animals or machines, then their views can hardly be informed or trustworthy, and their responses would be either mindless compliance or irrational resistance.3
Research has found, however, that some children do have the understanding, skill, and maturity to make decisions about their health care. Our purpose in this paper is to set out evidence we have gathered demonstrating that children can fulfill the criteria of competent decision-making as identified in some of the landmark documents on informed consent to medical research. We use examples from a study we conducted of children who have insulin-dependent (also known as juvenile or type 1) diabetes.4
Consent is usually considered in relation to surgery or medical research, although Anglo-American [End Page 25] law actually expects consent to be elicited before any touching of the patient. One study found that some children in a hospital setting were most upset by having their name tag fastened around their wrist.5 Such minor routines for practitioners may be major issues for patients, and one aspect of respect for consent is practitioners' sensitivity to patients' varying views and values.
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An earlier study of one hundred and twenty children who ranged from eight to fifteen years old and were undergoing, on average, their fourth elective operation showed that adults caring for them respected informed decisions about major surgery made by some children as young as seven years old.6 Instead of age or ability, the research found that experience is the salient factor in the children's intellectual and moral competence. One craniofacial surgeon considers that "most" children can actively participate in major surgery decision-making at about eight years.7
Dealing with diabetes, however, involves decisions that are both harder and easier than those concerning surgery. Although often complex, surgical decisions are usually specific and can be clearly explained. The fear, pain, and disruption of surgery are also time-limited, even if the effects are not. In contrast, a person diagnosed with diabetes must make daily minor decisions about diet, injections, and blood tests as part of a continuing, lifelong commitment—a practical consent associated with profound existential and partly unpredictable changes in personal identity and daily life. These children's decisions about diet are made in a social context and require them to weigh simple mundane choices versus starkly life-threatening risks, everyday versus complex endocrinological knowledge, and their peers' versus their health professionals' conceptions of the good life. Daily management of diabetes illuminates exceptionally clearly children's intellectual, moral, and social competencies because it is about controlling sugar, a key currency and symbol of childhood. In many cultures, confectionery is used to signify affection, popularity, and inclusion; to mark passing time (for example, birthday cakes); to celebrate holidays (for example, chocolate Easter eggs); to reward, bribe, or barter; and...