This study examined the development of young people's understanding of nurturance and self-determination rights. One hundred and sixty-nine participants from 5 age groups (8, 10, 12, 14, and 16 years of age) participated in a semistructured interview containing hypothetical vignettes, in which a story character wished to exercise a self-determination right or nurturance right that conflicted with the wishes or practices of those in authority. Participants were asked to decide if they would support the story character's request for rights and to justify their decisions. Younger children (8- to 12-year-olds) were significantly less likely to identify both nurturance and self-determination rights as salient than were older participants (14- to 16-year-olds). The types of reasoning participants exhibited for the two types of rights differed at all ages. Reasoning about nurturance rights did not show an age-related progression from concrete to abstract, whereas reasoning about self-determination rights was more likely to exhibit such a progression. Results suggest that previous attempts to explain the development of understanding of rights in terms of global stages does not fully capture children's and adolescents' reasoning, and, in particular, such a framework may not account for the differences in young people's thinking about the 2 types of rights.
This study examined the quality of children's assent to a clinical trial. In subjects younger than 9 years of age, understanding of most aspects of the study was found to be poor to non-existent. Understanding of procedures was poor in almost all subjects. In addition, voluntariness may have been compromised in many subjects by their belief that failure to complete the study would displease others. If the fact that a child's assent has been obtained is used to justify the exposure of that child to the potential harm of a non-therapeutic blood sample, the assent must be meaningful. In the nutrition study observed here, the quality of the assent of children younger than 9 years of age was very poor. Furthermore, these studies did not consider children's understanding in the context of the disclosure process. Woodward's cholera study showed that adults are capable of understanding large amounts of complex medical information.5Numerous other studies have shown, however, that this capacity is usually not realised in routine consent situations. It is hypothesised that routine assent situations similarly, neither facilitate understanding nor maximise voluntariness.The present pilot study was designed to measure the quality of assent to a non-therapeutic clinical trial. It was hoped that by examining understanding and experience amongst children participating in an actual medical study, some information could be gained about the strengths and weaknesses of current assent practices. Such descriptive information could be used to generate models for the assent process.We focused on the assent process amongst healthy children participating in a nontherapeutic study. It was hoped that by examining understanding in children who were not routinely exposed to the medical system, the effects of the assent process on understanding and the research experience could be better isolated. Furthermore, it could be argued that understanding of children's ability to assent is of particular importance for non-therapeutic research, where compromises to a child's autonomy are not balanced by potential direct health benefits.To date, the question of whether or not it is appropriate to subject children to blood sampling for the sake of research has been based on conceptual analysis. To our knowledge this is the first time that the assent process has been examined in healthy children volunteering to provide a blood sample for research. MethodsThe design of this study was a cross-sectional survey. The instrument was a semi-structured interview, administered by the author.
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