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  1. The Precision Medicine Nation.Maya Sabatello & Paul S. Appelbaum - 2017 - Hastings Center Report 47 (4):19-29.
    The United States’ ambitious Precision Medicine Initiative proposes to accelerate exponentially the adoption of precision medicine, an approach to health care that tailors disease diagnosis, treatment, and prevention to individual variability in genes, environment, and lifestyle. It aims to achieve this by creating a cohort of volunteers for precision medicine research, accelerating biomedical research innovation, and adopting policies geared toward patients’ empowerment. As strategies to implement the PMI are formulated, critical consideration of the initiative's ethical and sociopolitical dimensions is needed. (...)
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  • Medical Profiling and Online Medicine: The Ethics of ‘Personalised Healthcare’ in a Consumer Age.[author unknown] - 2012 - Jahrbuch für Wissenschaft Und Ethik 16 (1):441-446.
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  • Beyond Consent: Building Trusting Relationships With Diverse Populations in Precision Medicine Research.Stephanie A. Kraft, Mildred K. Cho, Katherine Gillespie, Meghan Halley, Nina Varsava, Kelly E. Ormond, Harold S. Luft, Benjamin S. Wilfond & Sandra Soo-Jin Lee - 2018 - American Journal of Bioethics 18 (4):3-20.
    With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...)
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  • From “Personalized” to “Precision” Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.Eric Juengst, Michelle L. McGowan, Jennifer R. Fishman & Richard A. Settersten - 2016 - Hastings Center Report 46 (5):21-33.
    Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...)
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