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  1. Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.Meghan C. Halley, Colin M. E. Halverson, Holly K. Tabor & Aaron J. Goldenberg - 2023 - American Journal of Bioethics 23 (7):17-26.
    Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease (...)
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  • Structural Injustice and the Politics of Difference1.Iris M. Young - 2009 - In Thomas Christiano & John Philip Christman (eds.), Contemporary Debates in Political Philosophy. Malden, MA: Wiley-Blackwell. pp. 362–383.
    This chapter contains sections titled: The Structural Inequality Approach Societal Culture Approach Who's Who in the Politics of Difference? The Meaning of Culture Worries about the Ascendancy of the Societal Culture Model Notes.
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  • Bounded Justice, Inclusion, and the Hyper/Invisibility of Race in Precision Medicine.Kadija Ferryman - 2023 - American Journal of Bioethics 23 (7):27-33.
    I take up the call for a more nuanced engagement with race in bioethics by using Creary’s analytic of bounded justice and argue that it helps illuminate processes of racialization, or racial formation, specifically Blackness, as a dialectical processes of both invisibility and hyper-visibility. This dialectical view of race provides a lens through which the ethical, legal, and social implications (ELSI) of genetics and genomics field can reflect on fraught issues such as inclusion in genomic and biomedical research. Countering or (...)
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  • Bounded Justice and the Limits of Health Equity.Melissa S. Creary - 2021 - Journal of Law, Medicine and Ethics 49 (2):241-256.
    Programs, policies, and technologies — particularly those concerned with health equity — are often designed with justice envisioned as the end goal. These policies or interventions, however, frequently fail to recognize how the beneficiaries have historically embodied the cumulative effects of marginalization, which undermines the effectiveness of the intended justice. These well-meaning attempts at justice are bounded by greater socio-historical constraints. Bounded justice suggests that it is impossible to attend to fairness, entitlement, and equity when the basic social and physical (...)
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