Pediatric medicine, the branch of medicine dedicated to taking care of children, is a relatively new medical specialty, developing in the mid-19th century. Pediatrics emerged as society began to believe that children were different from adults and in need of specialized care. Soon after the development of specialty medicine for children it became evident that many challenging ethical issues were present with children that did not exist, or at least not to the same extent with adults. In some cases, issues are similar, however they become much more complex or challenging when applied to children. The field of pediatrics is constantly changing and developing, with tremendous advancements within the fields of genetics, neuroscience, and clinical research. Developments in these fields have led to the emergence of many new diagnostic and therapeutic interventions for children, but with these new technologies come enhanced ethical issues and challenging decisions. Currently within pediatric medicine, decision-making processes are primarily guided by the models of adult surrogate decision making, in particular substituted judgment and best interests models. The substituted judgment model focuses on executing the wishes of the patient, while best interests asks the surrogate to select the course of action that will most benefit the patient overall. These models are ethically contested within adult medicine, the field in which they originated, and are even more problematic when applied to children, specifically mature minors with varying developmental levels. In pediatrics, the best interests standard is the typical model advocated for because children, as children, cannot legally make their own decisions, however that does not mean they should be automatically excluded from decision making processes or assumed to lack decision making capacity. These issues become larger when dealing with mature minors due to issues of agency, consent and assent, stewardship, and the vulnerable status of the child. Children are not only viewed as vulnerable by society, but many times parents as well. Many parents feel it is their obligation and duty to not only take care of their children but also advocate for and protect them. Additionally, because they are so emotionally invested and connected to the child, it is difficult to comprehend situations where the child is at risk or they are told something they never imagined or thought about, such as that their child is very sick and in need of advanced medical care. There are heightened emotions present due to the parent-child relationship. Despite parents wanting to protect their children, in most medical instances they are unable to do so, leaving parents vulnerable and full of emotion. Making decisions for another is very challenging in all instances throughout medicine, complicated even more so when the person for whom decisions are being made is a relative and a person that one strives to protect and take care of on a day to day basis. Additionally in pediatrics many decisions have higher stakes and longer impacts, due to the age, status, and development of the child. Parents are in very challenging positions when making decisions for their children in light of the tremendous amounts of uncertainty that accompany new and emerging technologies, including obstacles that make determining the child’s best interests and inevitably make a decision challenging. The addition of complicated medical information from presented by the new technologies within the fields of genetics, neuroscience, and clinical research, combined with the and heightened emotions only complicates this process, necessitating an enhanced decision making model. <br>As in areas of adult medicine, decisions are challenging and difficult to work through, complicated more by the lacking of explicit goals of pediatric medicine and an overarching framework to use to structure all decision making processes, which exists in adult medicine. The current decision-making models do not accommodate the fact that within pediatrics there is a long term relationship and partnership that must be created and nurtured by all those involved; decisions are therefore not isolated decisions but components of a continuum. Additionally, they do not ensure that parents receive support and guidance, identify the level of involvement of an older child, or facilitate and assist with decisions when parents and physicians disagree. Along with some of the objective elements of medicine, pediatric decision making has many subjective components, and emerging technologies create even more. On the basis of these considerations, it is argued that there is a need for an enhanced decision making model developed out of the field of pediatrics, centered around the goals of pediatric medicine. Current models need to be reconsidered in order to outline a model that enables parents to make the optimal decision for their child in light of the possibilities of emerging technologies. <br>This dissertation will look at the question “Why should an enhanced model for parental decision making be advocated for within pediatric care, and how can such a model be developed and applied?” In Chapter 2 the history and development of the field of pediatrics will be looked at, followed by an analysis of the current decision making models of adult medicine in Chapter 3, demonstrating that they do not apply well to mature minors and are not sufficient for pediatric medicine. In Chapter 4 the changing field of pediatric medicine will be explained, the new technologies will be introduced, and the ethical issues that the current models of decision making do not accommodate will be presented. In Chapter 5, an enhanced model of shared decision making related to the goals of pediatric medicine will be developed followed by an analysis of the roles of parties involved and how they should work together to achieve the best results for the child who is the patient. In chapter 6 the enhanced decision making model will be applied to areas of genetic screening, neuroscience, and clinical research to show how it will better facilitate decisions within these areas and address the concerns that the new technologies and developments create throughout present-day pediatrics. Pediatric medicine is in great need of an enhanced parental decision-making model that addresses the goals of pediatric medicine to ensure that the best decisions are made in the face of new technologies and the continuous advancement of care for children. / McAnulty College and Graduate School of Liberal Arts; / Health Care Ethics / PhD; / Dissertation;

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In the current healthcare landscape, parents generally make decisions regarding whether or not their children are allowed to take part in clinical research, with the general assumption being that parents know what is best for children. Investigations have been conducted regarding what is likely to lead parents to consent or not consent to their child’s participation in a trial, but research plans seldom incorporate the consideration that not all parents come into the consent process with equal social, academic, and economic footing. Since the burden of the ultimate decision lies primarily on the parents, it is supremely important that they are capable of making a well-informed and thoughtful choice. Bioethical understanding of the influence of parental decisions in clinical research must consider demographic variables and how they may affect parents’ decisions to allow or disallow their child to participate in a clinical trial. Those differences could affect the consent process and have ramifications for the research findings, as research results are affected in numerous ways by which children do, and do not, participate in studies. This paper looks specifically at parents in the process of informed consent for pediatric research, taking into account several social determinants of health and how they affect who participates in research and how that affects research as a whole. / Urban Bioethics