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  1. Collaborative Partnership and the Social Value of Clinical Research: A Qualitative Secondary Analysis.Sanna-Maria Nurmi, Arja Halkoaho, Mari Kangasniemi & Anna-Maija Pietilä - 2017 - BMC Medical Ethics 18 (1):57.
    Protecting human subjects from being exploited is one of the main ethical challenges for clinical research. However, there is also a responsibility to protect and respect the communities who are hosting the research. Recently, attention has focused on the most efficient way of carrying out clinical research, so that it benefits society by providing valuable research while simultaneously protecting and respecting the human subjects and the communities where the research is conducted. Collaboration between partners plays an important role and that (...)
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  • Reconceptualizing Autonomy for Bioethics.Lisa Dive & Ainsley J. Newson - 2018 - Kennedy Institute of Ethics Journal 28 (2):171-203.
    The concept of autonomy plays a central role in bioethics,1 but there is no consensus as to how we should understand it beyond a general notion of self-determination. The conception of autonomy deployed in applied ethics2 can have crucial ramifications when it is applied in real-world scenarios, so it is important to be clear. However, this clarity is often lacking when autonomy is discussed in the bioethics literature. In this paper we outline three different conceptions of autonomy, and argue that (...)
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  • 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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  • "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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  • On Female Genital Cutting: Factors to Be Considered When Confronted With a Request to Re-Infibulate.Mona Saleh, Phoebe Friesen & Veronica Ades - 2018 - Journal of Bioethical Inquiry 15 (4):549-555.
    According to the World Health Organization, female genital cutting affects millions of girls and women worldwide, particularly on the African continent and in the Middle East. This paper presents a plausible, albeit hypothetical, clinical vignette and then explores the legal landscape as well as the ethical landscape physicians should use to evaluate the adult patient who requests re-infibulation. The principles of non-maleficence, beneficence, justice, and autonomy are considered for guidance, and physician conscientious objection to this procedure is discussed as well. (...)
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  • 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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  • 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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