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    AN URBAN BIOETHICS APPROACH TO PARENTAL INFORMED CONSENT FOR PEDIATRIC CLINICAL RESEARCH

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    Genre
    Thesis/Dissertation
    Date
    2018
    Author
    Flanagan, Ellen Cecelia
    Advisor
    Jones, Nora L.
    Department
    Urban Bioethics
    Subject
    Medical Ethics
    Ethics
    Informed Consent
    Pediatric Research
    Social Determinants of Health
    Urban Bioethics
    Permanent link to this record
    http://hdl.handle.net/20.500.12613/1224
    
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    DOI
    http://dx.doi.org/10.34944/dspace/1206
    Abstract
    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.
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