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  1. Precision Medicine for Whom? Public Health Outputs from “Genomics England” and “All of Us” to Make Up for Upstream and Downstream Exclusion.Ilaria Galasso - 2023 - American Journal of Bioethics 24 (3):71-85.
    This paper problematizes the precision medicine approach embraced by the All of Us Research Program (US) and by Genomics England (UK) in terms of benefits distribution, by arguing that current “diversity and inclusion” efforts do not prevent exclusiveness, unless the framing and scope of the projects are revisited in public health terms. Grounded on document analysis and fieldwork interviews, this paper analyzes efforts to address potential patterns of exclusion upstream (from participating in precision medicine research) and downstream (from benefitting from (...)
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  • Do Medically Underserved Individuals Benefit from Participating in All of Us?Mark A. Rothstein - 2024 - American Journal of Bioethics 24 (3):94-96.
    There are compelling scientific, political, historical, legal, and ethical reasons why the All of Us research program participants should reflect the population of the United States. Many commentat...
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  • Missing the “We” in Precision Medicine.Alberto Aparicio - 2024 - American Journal of Bioethics 24 (3):96-98.
    Biomedicine in recent decades has been defined by an increasing tendency to turn social problems into biomedical questions. Precision or personalized health initiatives have gained attention due to...
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  • GINA at Ten and the Future of Genetic Nondiscrimination Law.Mark A. Rothstein - 2018 - Hastings Center Report 48 (3):5-7.
    May 21, 2018, marks the tenth anniversary of the signing into law of the Genetic Information Nondiscrimination Act. The Congressional deliberations for GINA were long and difficult. The original bill was introduced in 1995, and for many years, it did not look as if the bill would ever emerge from committee. Several of its provisions raised concerns for insurers, employers, and other stakeholders. After thirteen years, the controversial provisions were either deleted, revised, or clarified. At this ten‐year mark, it is (...)
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  • Big Data, Surveillance Capitalism, and Precision Medicine: Challenges for Privacy.Mark A. Rothstein - 2021 - Journal of Law, Medicine and Ethics 49 (4):666-676.
    Surveillance capitalism companies, such as Google and Facebook, have substantially increased the amount of information collected, analyzed, and monetized, including health information increasingly used in precision medicine research, thereby presenting great challenges for health privacy.
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  • Precision medicine and the problem of structural injustice.Sara Green, Barbara Prainsack & Maya Sabatello - 2023 - Medicine, Health Care and Philosophy 26 (3):433-450.
    Many countries currently invest in technologies and data infrastructures to foster precision medicine (PM), which is hoped to better tailor disease treatment and prevention to individual patients. But who can expect to benefit from PM? The answer depends not only on scientific developments but also on the willingness to address the problem of structural injustice. One important step is to confront the problem of underrepresentation of certain populations in PM cohorts via improved research inclusivity. Yet, we argue that the perspective (...)
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  • Personalized Medicine in Practice: Postgenomics from Multiplicity to Immutability.Nadav Even Chorev - 2020 - Body and Society 26 (1):26-54.
    This article explores the ways in which predictive information technologies are used in the field of personalized medicine and the relations between this use and how patients and disease are perceived. This is examined in a qualitative case study of a personalized cancer clinical trial, where oncologists made clinical decisions for each patient based on drug matchings and efficacy predictions produced by bioinformatic technologies and algorithms. I focus on personalized practice itself, as a postgenomic phenomenon, rather than on epistemic, ethical (...)
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