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  1. “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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  • A Just Genomics Needs an ELSI of Translation.Meghan C. Halley, Nate W. Olson, Euan A. Ashley, Aaron J. Goldenberg & Holly K. Tabor - 2024 - Hastings Center Report 54 (S2):126-135.
    The rapid advances in genomics over the last decade have come to fruition amid intense public discussions of justice in medicine and health care. While much emphasis has been placed on increasing diversity in genomics research participation, an overly narrow focus on recruitment eschews recognition of the disparities in health care that will ultimately shape access to the benefits of genomic medicine. In this essay, we suggest that achieving a just genomics, both now and in the future, requires an explicit (...)
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  • Moving toward Equity through Embedded ELSI Ethnography.Jennifer Elyse James, Leslie Riddle, Barbara Koenig & Galen Joseph - 2024 - Hastings Center Report 54 (S2):93-101.
    This paper describes the unique values of, challenges within, and opportunities presented by embedded ELSI ethnography. Drawing from our six‐year embedded ELSI study of the WISDOM (Women Informed to Screen Depending on Measures of Risk) trial, we present three examples of the variable ways we engaged with the WISDOM trial's scientific team. WISDOM is a preference‐sensitive, pragmatic, randomized controlled trial of risk‐based breast cancer screening informed by genomics. Our embedded ELSI approach included multiple modes of engagement: (a) Trial investigators sought (...)
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