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  1.  15
    Ethical Responsibilities for Companies That Process Personal Data.Matthew S. McCoy, Anita L. Allen, Katharina Kopp, Michelle M. Mello, D. J. Patil, Pilar Ossorio, Steven Joffe & Ezekiel J. Emanuel - 2023 - American Journal of Bioethics 23 (11):11-23.
    It has become increasingly difficult for individuals to exercise meaningful control over the personal data they disclose to companies or to understand and track the ways in which that data is exchanged and used. These developments have led to an emerging consensus that existing privacy and data protection laws offer individuals insufficient protections against harms stemming from current data practices. However, an effective and ethically justified way forward remains elusive. To inform policy in this area, we propose the Ethical Data (...)
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  2.  36
    Ethical Advocacy Across the Autism Spectrum: Beyond Partial Representation.Matthew S. McCoy, Emily Y. Liu, Amy S. F. Lutz & Dominic Sisti - 2020 - American Journal of Bioethics 20 (4):13-24.
    Recent debates within the autism advocacy community have raised difficult questions about who can credibly act as a representative of a particular population and what responsibilities that...
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  3. What are the obligations of pharmaceutical companies in a global health emergency?Ezekiel J. Emanuel, Allen Buchanan, Shuk Ying Chan, Cécile Fabre, Daniel Halliday, Joseph Heath, Lisa Herzog, R. J. Leland, Matthew S. McCoy, Ole F. Norheim, Carla Saenz, G. Owen Schaefer, Kok-Chor Tan, Christopher Heath Wellman, Jonathan Wolff & Govind Persad - 2021 - Lancet 398 (10304):1015.
    All parties involved in researching, developing, manufacturing, and distributing COVID-19 vaccines need guidance on their ethical obligations. We focus on pharmaceutical companies' obligations because their capacities to research, develop, manufacture, and distribute vaccines make them uniquely placed for stemming the pandemic. We argue that an ethical approach to COVID-19 vaccine production and distribution should satisfy four uncontroversial principles: optimising vaccine production, including development, testing, and manufacturing; fair distribution; sustainability; and accountability. All parties' obligations should be coordinated and mutually consistent. For (...)
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  4.  36
    On the Ethics of Vaccine Nationalism: The Case for the Fair Priority for Residents Framework.Ezekiel J. Emanuel, Allen Buchanan, Shuk Ying Chan, Cécile Fabre, Daniel Halliday, R. J. Leland, Florencia Luna, Matthew S. McCoy, Ole F. Norheim, G. Owen Schaefer, Kok-Chor Tan & Christopher Heath Wellman - 2021 - Ethics and International Affairs 35 (4):543-562.
    COVID-19 vaccines are likely to be scarce for years to come. Many countries, from India to the U.K., have demonstrated vaccine nationalism. What are the ethical limits to this vaccine nationalism? Neither extreme nationalism nor extreme cosmopolitanism is ethically justifiable. Instead, we propose the fair priority for residents framework, in which governments can retain COVID-19 vaccine doses for their residents only to the extent that they are needed to maintain a noncrisis level of mortality while they are implementing reasonable public (...)
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  5.  40
    National Standards for Public Involvement in Research: missing the forest for the trees.Matthew S. McCoy, Karin Rolanda Jongsma, Phoebe Friesen, Michael Dunn, Carolyn Plunkett Neuhaus, Leah Rand & Mark Sheehan - 2018 - Journal of Medical Ethics 44 (12):801-804.
    Biomedical research funding bodies across Europe and North America increasingly encourage—and, in some cases, require—investigators to involve members of the public in funded research. Yet there remains a striking lack of clarity about what ‘good’ or ‘successful’ public involvement looks like. In an effort to provide guidance to investigators and research organisations, representatives of several key research funding bodies in the UK recently came together to develop the National Standards for Public Involvement in Research. The Standards have critical implications for (...)
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  6.  21
    Patient‐Engaged Research: Choosing the “Right” Patients to Avoid Pitfalls.Emily A. Largent, Holly Fernandez Lynch & Matthew S. McCoy - 2018 - Hastings Center Report 48 (5):26-34.
    To ensure that the information resulting from research is relevant to patients, the Patient‐Centered Outcomes Research Institute eschews the “traditional health research” paradigm, in which investigators drive all aspects of research, in favor of one in which patients assume the role of research partner. If we accept the premise that patient engagement can offer fresh perspectives that shape research in valuable ways, then at least two important sets of questions present themselves. First, how are patients being engaged—and how should they (...)
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  7.  10
    Patient and public involvement: Two sides of the same coin or different coins altogether?Matthew S. McCoy, Jonathan Warsh, Leah Rand, Michael Parker & Mark Sheehan - 2019 - Bioethics 33 (6):708-715.
    Patient and public involvement (PPI) has gained widespread support in health research and health policy circles, but there is little consensus on the precise meaning or justifications of PPI. We argue that an important step towards clarifying the meaning and justification for PPI is to split apart the familiar acronym and draw a distinction between patient and public involvement. Specifically, we argue that patient involvement should refer to the practice of involving individuals in health research or policy on the basis (...)
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  8.  14
    A Content Analysis of Patient Advocacy Organization Policies Addressing Institutional Conflicts of Interest.John H. Brems & Matthew S. McCoy - forthcoming - AJOB Empirical Bioethics:1-7.
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  9.  6
    Who Is Responsible for Promoting Equity in Rare Disease Research?Matthew S. McCoy - 2023 - American Journal of Bioethics 23 (7):83-85.
    Stories of rare disease advocacy can elicit strong but ambivalent responses. It’s moving to read about the heroic efforts of parents “becoming drug developers to find a cure for their children’s ra...
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  10. Response to Open Peer Commentaries on “Ethical Responsibilities for Companies That Process Personal Data”.Matthew S. McCoy, Ezekiel J. Emanuel & Steven Joffe - forthcoming - American Journal of Bioethics:1-5.
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