Ethical Implications of Osteogenesis Imperfecta across the Lifespan

Coors, Marilyn E.

doi:10.1016/b978-0-12-397165-4.00041-1

Cited by 1 publication

(1 citation statement)

References 57 publications

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“…1,8 Background Preliminary evidence suggests that children with OI confront a host of ethical concerns in their daily lives, such as unexplained injuries and unintended consequences associated with inconclusive genetic tests 9 ; social isolation, 3 feelings of "otherness," 10 and describing oneself as "mutants" 11 ; and being frequent recipients of larger societal discourses about genetic screening, 9,12 selective pregnancy termination, 13 and disparaging messages related to disability. 14 HCPs and other adults may perpetuate, exacerbate, or contribute to these ethical concerns by underestimating or disregarding children's competencies due to their status as minors or misconceptions about disability. 1,8,10,15 In an analysis of children's agency, Montreuil and Carnevale 16 found that children's voices and agential capacities were often undervalued by healthcare measures intended to protect their best interests.…”

Section: Introductionmentioning

confidence: 99%

The moral experiences of children with osteogenesis imperfecta

et al. 2022

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Background Serious ethical problems have been anecdotally identified in the care of children with osteogenesis imperfecta (OI), which may negatively impact their moral experiences, defined as their sense of fulfillment towards personal values and beliefs. Research aims To explore children’s actual and desired participation in discussions, decisions, and actions in an OI hospital setting and their community using art-making to facilitate their self-expression. Research design A focused ethnography was conducted using the moral experiences framework with data from key informant interviews; participant observations, semi-structured interviews, and practice-based research (art-making) with 10 children with OI; and local documents. Participants and research context The study was conducted at a pediatric, orthopedic hospital. Ethical considerations This study was approved by McGill University Institutional Review Board. Findings/results Children expressed desires to participate in their care, but sometimes lacked the necessary resources and encouragement from healthcare providers. Art-making facilitated children’s voice and participation in health-related discussions. Conclusions Healthcare providers are recommended to consider the benefits of art-making and educational resources to reduce discrepancies between children’s actual and desired participation in care and promote positive moral experiences.

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