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  1. Health Research with Big Data: Time for Systemic Oversight.Effy Vayena & Alessandro Blasimme - 2018 - Journal of Law, Medicine and Ethics 46 (1):119-129.
    To address the ethical challenges in big data health research we propose the concept of systemic oversight. This approach is based on six defining features and aims at creating a common ground across the oversight pipeline of biomedical big data research. Current trends towards enhancing granularity of informed consent and specifying legal provisions to address informational privacy and discrimination concerns in data-driven health research are laudable. However, these solutions alone cannot have the desired impact unless oversight activities by different stakeholders (...)
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  • Ethics Policies and Ethics Work in Cross-National Genetic Research and Data Sharing: Flows, Nonflows, and Overflows.Malene Bøgehus Rasmussen, Aaro Tupasela & Klaus Hoeyer - 2017 - Science, Technology, and Human Values 42 (3):381-404.
    In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social ties enacted in (...)
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  • 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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  • Stance in a Corsican School: Institutional and Ideological Orders and the Production of Bilingual Subjects.Alexandra Jaffe - forthcoming - Stance: Sociolinguistic Perspectives.
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  • Genomic Incidental Findings: Reducing the Burden to Be Fair.Velizara Anastasova, Alessandro Blasimme, Sophie Julia & Anne Cambon-Thomsen - 2013 - American Journal of Bioethics 13 (2):52-54.
  • Response to Open Peer Commentaries on “Genomic Inheritances: Disclosing Individual Research Results From Whole-Exome Sequencing to Deceased Participants' Relatives”.Sara Chandros Hull, Ben Chan, Leslie G. Biesecker & Benjamin E. Berkman - 2012 - American Journal of Bioethics 12 (12):W9-W10.