In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie... Show moreIn debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be determined in concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child's future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the 'deliberative model' of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers. Show less
Few medical specialties encounter so many ethical challenges as pediatrics does. It is a specialty that inherently has features that are morally charged. Pediatric ethics examines the broad issues... Show moreFew medical specialties encounter so many ethical challenges as pediatrics does. It is a specialty that inherently has features that are morally charged. Pediatric ethics examines the broad issues of (1) the concept of the child__s best interest; (2) parental responsibility and authority in decision-making about the life and health of a child; (3) the emerging desire and capacity for self-determination of an older child, and (4) the professional obligation of a pediatrician to act in the best interests of the child. Much is written about these issues, but often the literature on these topics is either __academic__ and theoretical in nature, or casuistic. It remains difficult to utilize what is written in the reality of pediatric practice. In this thesis we reflect on the question how the concepts of best interests, parental authority and child participation can and should be translated and made operational in the everyday encounter between parents, physicians and children. We therefore combine theoretical conceptions of the best interest standard, child participation and parental authority with a close look on how these concepts actually function in pediatric practice, and how they are conceived by actors in the pediatric field. Show less
