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  1.  31
    AI4People—An Ethical Framework for a Good AI Society: Opportunities, Risks, Principles, and Recommendations.Luciano Floridi, Josh Cowls, Monica Beltrametti, Raja Chatila, Patrice Chazerand, Virginia Dignum, Christoph Luetge, Robert Madelin, Ugo Pagallo, Francesca Rossi, Burkhard Schafer, Peggy Valcke & Effy Vayena - 2018 - Minds and Machines 28 (4):689-707.
    This article reports the findings of AI4People, an Atomium—EISMD initiative designed to lay the foundations for a “Good AI Society”. We introduce the core opportunities and risks of AI for society; present a synthesis of five ethical principles that should undergird its development and adoption; and offer 20 concrete recommendations—to assess, to develop, to incentivise, and to support good AI—which in some cases may be undertaken directly by national or supranational policy makers, while in others may be led by other (...)
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  2.  32
    Becoming Partners, Retaining Autonomy: Ethical Considerations on the Development of Precision Medicine.Alessandro Blasimme & Effy Vayena - 2016 - BMC Medical Ethics 17 (1):67.
    Precision medicine promises to develop diagnoses and treatments that take individual variability into account. According to most specialists, turning this promise into reality will require adapting the established framework of clinical research ethics, and paying more attention to participants’ attitudes towards sharing genotypic, phenotypic, lifestyle data and health records, and ultimately to their desire to be engaged as active partners in medical research.Notions such as participation, engagement and partnership have been introduced in bioethics debates concerning genetics and large-scale biobanking to (...)
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  3.  8
    Health Research with Big Data: Time for Systemic Oversight.Effy Vayena & Alessandro Blasimme - 2018 - Journal of Law, Medicine and Ethics 46 (1):119-129.
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  4.  3
    Direct-to-Consumer Neurotechnology: What Is It and What Is It For?Marcello Ienca & Effy Vayena - 2019 - American Journal of Bioethics Neuroscience 10 (4):149-151.
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  5.  6
    Is There a Duty to Participate in Digital Epidemiology?Brent Mittelstadt, Justus Benzler, Lukas Engelmann, Barbara Prainsack & Effy Vayena - 2018 - Life Sciences, Society and Policy 14 (1):1-24.
    This paper poses the question of whether people have a duty to participate in digital epidemiology. While an implied duty to participate has been argued for in relation to biomedical research in general, digital epidemiology involves processing of non-medical, granular and proprietary data types that pose different risks to participants. We first describe traditional justifications for epidemiology that imply a duty to participate for the general public, which take account of the immediacy and plausibility of threats, and the identifiability of (...)
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  6.  28
    Biomedical Big Data: New Models of Control Over Access, Use and Governance.Alessandro Blasimme & Effy Vayena - 2017 - Journal of Bioethical Inquiry 14 (4):501-513.
    Empirical evidence suggests that while people hold the capacity to control their data in high regard, they increasingly experience a loss of control over their data in the online world. The capacity to exert control over the generation and flow of personal information is a fundamental premise to important values such as autonomy, privacy, and trust. In healthcare and clinical research this capacity is generally achieved indirectly, by agreeing to specific conditions of informational exposure. Such conditions can be openly stated (...)
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  7.  15
    Key Ethical Challenges in the European Medical Information Framework.Luciano Floridi, Christoph Luetge, Ugo Pagallo, Burkhard Schafer, Peggy Valcke, Effy Vayena, Janet Addison, Nigel Hughes, Nathan Lea, Caroline Sage, Bart Vannieuwenhuyse & Dipak Kalra - 2019 - Minds and Machines 29 (3):355-371.
    The European Medical Information Framework project, funded through the IMI programme, has designed and implemented a federated platform to connect health data from a variety of sources across Europe, to facilitate large scale clinical and life sciences research. It enables approved users to analyse securely multiple, diverse, data via a single portal, thereby mediating research opportunities across a large quantity of research data. EMIF developed a code of practice to ensure the privacy protection of data subjects, protect the interests of (...)
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  8.  14
    "Tailored-to-You": Public Engagement and the Political Legitimation of Precision Medicine.Alessandro Blasimme & Effy Vayena - 2016 - Perspectives in Biology and Medicine 59 (2):172-188.
    Some patients tolerate a given drug well, without adverse reactions. For others, though, an identical dose of the same medication can have toxic effects. Moreover, while a drug can be effective at relieving symptoms for some patients, it may fail to do the same for others suffering with the same disease. With such variability in treatment responses, tailoring medical interventions to individual patients has long been an aspiration of medicine. Until recently, however, medicine lacked a clear understanding of the biological (...)
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  9.  28
    Informed Consent and the Disclosure of Clinical Results to Research Participants.Effy Vayena, Samia A. Hurst, Celine Moret & Alessandro Blasimme - 2017 - American Journal of Bioethics 17 (7):58-60.
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  10.  18
    Digital Medicine and Ethics: Rooting for Evidence.Effy Vayena & Marcello Ienca - 2018 - American Journal of Bioethics 18 (9):49-51.
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  11.  21
    “We the Scientists”: A Human Right to Citizen Science.Effy Vayena & John Tasioulas - 2015 - Philosophy and Technology 28 (3):479-485.
    The flourishing of citizen science is an exciting phenomenon with the potential to contribute significantly to scientific progress. However, we lack a framework for addressing in a principled and effective manner the pressing ethical questions it raises. We argue that at the core of any such framework must be the human right to science. Moreover, we stress an almost entirely neglected dimension of this right—the entitlement it confers on all human beings to participate in the scientific process in all of (...)
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  12.  34
    The Place of Human Rights and the Common Good in Global Health Policy.John Tasioulas & Effy Vayena - 2016 - Theoretical Medicine and Bioethics 37 (4):365-382.
    This article offers an integrated account of two strands of global health justice: health-related human rights and health-related common goods. After sketching a general understanding of the nature of human rights, it proceeds to explain both how individual human rights are to be individuated and the content of their associated obligations specified. With respect to both issues, the human right to health is taken as the primary illustration. It is argued that the individuation of the right to health is fixed (...)
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  13.  11
    Genes Wide Open: Data Sharing and the Social Gradient of Genomic Privacy.Tobias Haeusermann, Marta Fadda, Alessandro Blasimme, Bastian Greshake Tzovaras & Effy Vayena - forthcoming - Ajob Empirical Bioethics:1-15.
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  14.  8
    Democratizing Health Research Through Data Cooperatives.Alessandro Blasimme, Effy Vayena & Ernst Hafen - 2018 - Philosophy and Technology 31 (3):473-479.
    Massive amounts of data are collected and stored on a routine basis in virtually all domains of human activities. Such data are potentially useful to biomedicine. Yet, access to data for research purposes is hindered by the fact that different kinds of individual-patient data reside in disparate, unlinked silos. We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. Data cooperatives enable direct control over personal data, as well as more democratic (...)
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  15.  10
    Philanthropy on Trial: Can the Rich Rescue Shelved Compounds?Effy Vayena - 2017 - Journal of Medical Ethics 43 (11):737-738.
    Translational medicine has excited expectations of the drug development process seeing better days. Hope is much needed, as the process in its current form is ‘unsustainable’1 and its yield unimpressive. Only a small percentage of highly promising molecular discoveries find their way into a clinical trial and even a smaller percentage ends up in a pharmaceutical product marketed for clinical indications. Various reasons contribute to this problem ranging from purely biomedical, safety and efficacy ones, to merely commercial calculations. Large numbers (...)
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  16.  7
    A Code of Ethics for Ethicists: What Would Pierre Bourdieu Say? “Do Not Misuse Social Capital in the Age of Consortia Ethics”.Vural Özdemir, Hakan Kılıç, Arif Yıldırım, Effy Vayena, Edward S. Dove, Kıvanç Güngör, Adrian LLerena & Semra Şardaş - 2015 - American Journal of Bioethics 15 (5):64-67.