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  1. How Ought Decisions That Weigh on Life and Death Be Justly Informed and Governed to Benefit More than the Privileged Few with Access to a Trusted Clinician?Barbara A. Koenig & Julia E. H. Brown - 2022 - American Journal of Bioethics 22 (2):1-3.
    The two target articles in this issue bring into focus the struggle for governance over biomedical interventions that may offer some families more agency—the capacity to act—in the context of many...
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  • “I Have Fought for so Many Things”: Disadvantaged families’ Efforts to Obtain Community-Based Services for Their Child after Genomic Sequencing.Sara L. Ackerman, Julia E. H. Brown, Astrid Zamora & Simon Outram - 2023 - AJOB Empirical Bioethics 14 (4):208-217.
    Background Families whose child has unexplained intellectual or developmental differences often hope that a genetic diagnosis will lower barriers to community-based therapeutic and support services. However, there is little known about efforts to mobilize genetic information outside the clinic or how socioeconomic disadvantage shapes and constrains outcomes.Methods We conducted an ethnographic study with predominantly socioeconomically disadvantaged families enrolled in a multi-year genomics research study, including clinic observations and in-depth interviews in English and Spanish at multiple time points. Coding and thematic (...)
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