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  1. Moving toward Equity through Embedded ELSI Ethnography.Jennifer Elyse James, Leslie Riddle, Barbara Koenig & Galen Joseph - 2024 - Hastings Center Report 54 (S2).
    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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  • A Vision for Empirical ELSI along the R&D Pipeline.Ramya M. Rajagopalan, Julie Cakici & Cinnamon S. Bloss - 2024 - AJOB Empirical Bioethics 15 (2):81-86.
    In the 30 years since its inception under the auspices of the National Human Genome Research Institute (NHGRI), the field devoted to examining the ethical, legal and social implications (ELSI) of g...
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  • “Ethical Responsibility Very Often Gets Drowned Out”: A Qualitative Interview Study of Genome Scientists’ and ELSI Scholars’ Perspectives on the Role and Relevance of ELSI Expertise.Daphne O. Martschenko, Anna Granucci & Mildred K. Cho - 2024 - AJOB Empirical Bioethics 15 (4):312-323.
    Background Genome scientists and Ethical, Legal, and Social Implications of genetics (ELSI) scholars commonly inhabit distinct research cultures – utilizing different research methods, asking different research questions, and valuing different types of knowledge. Collaborations between these two communities are frequently called for to enhance the ethical conduct of genomics research. Yet, little has been done to qualitatively compare genome scientists’ and ELSI scholars’ perspectives on collaborations with each other and the factors that may affect these collaborations.Methods 20 semi-structured interviews with (...)
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