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  1. Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Alex McKeown, Miranda Mourby, Paul Harrison, Sophie Walker, Mark Sheehan & Ilina Singh - 2021 - Science and Engineering Ethics 27 (1):1-21.
    Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating (...)
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  • 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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  • “Hunting Down My Son’s Killer”: New Roles of Patients in Treatment Discovery and Ethical Uncertainty.Marcello Ienca & Effy Vayena - 2020 - Journal of Bioethical Inquiry 17 (1):37-47.
    The past few years have witnessed several media-covered cases involving citizens actively engaging in the pursuit of experimental treatments for their medical conditions—or those of their loved ones—in the absence of established standards of therapy. This phenomenon is particularly observable in patients with rare genetic diseases, as the development of effective therapies for these disorders is hindered by the limited profitability and market value of pharmaceutical research. Sociotechnical trends at the cross-section of medicine and society are facilitating the involvement of (...)
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  • 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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  • Meeting the Needs of Underserved Populations: Setting the Agenda for More Inclusive Citizen Science of Medicine.Amelia Fiske, Barbara Prainsack & Alena Buyx - 2019 - Journal of Medical Ethics 45 (9):617-622.
    In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...)
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  • From “Informed” to “Engaged” Consent: Risks and Obligations in Consent for Participation in a Health Data Repository.Elizabeth Bromley, Alexandra Mendoza-Graf, Sandra Berry, Camille Nebeker & Dmitry Khodyakov - 2020 - Journal of Law, Medicine and Ethics 48 (1):172-182.
    The development and use of large and dynamic health data repositories designed to support research pose challenges to traditional informed consent models. We used semi-structured interviewing to elicit diverse research stakeholders' views of a model of consent appropriate to participation in initiatives that entail collection, long-term storage, and undetermined future research use of multiple types of health data. We demonstrate that, when considering health data repositories, research stakeholders replace a concept of consent as informed with one in which consent is (...)
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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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  • Trust and Justice in Big Data Analytics: Bringing the Philosophical Literature on Trust to Bear on the Ethics of Consent.J. Patrick Woolley - 2019 - Philosophy and Technology 32 (1):111-134.
    Much bioethical literature and policy guidances for big data analytics in biomedical research emphasize the importance of trust. It is essential that potential participants trust so they will allow their data to be used to further research. However, comparatively, little guidance is offered as to what trustworthy oversight mechanisms are, or how policy should support them, as data are collected, shared, and used. Generally, “trust” is not characterized well enough, or meaningfully enough, for the term to be systematically applied in (...)
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  • Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.J. Patrick Woolley, Michelle L. McGowan, Harriet J. A. Teare, Victoria Coathup, Jennifer R. Fishman, Richard A. Settersten, Sigrid Sterckx, Jane Kaye & Eric T. Juengst - 2016 - BMC Medical Ethics 17 (1):1.
    The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...)
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  • Return of Results in Participant-Driven Research: Learning From Transformative Research Models.Susan M. Wolf - 2020 - Journal of Law, Medicine and Ethics 48 (S1):159-166.
    Participant-driven research is a burgeoning domain of research innovation, often facilitated by mobile technologies. Return of results and data are common hallmarks, grounded in transparency and data democracy. PDR has much to teach traditional research about these practices and successful engagement. Recommendations calling for new state laws governing research with mHealth modalities common in PDR and federal creation of review mechanisms, threaten to stifle valuable participant-driven innovation, including in return of results.
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  • The Rise of Citizen Science in Health and Biomedical Research.Andrea Wiggins & John Wilbanks - 2019 - American Journal of Bioethics 19 (8):3-14.
    Citizen science models of public participation in scientific research represent a growing area of opportunity for health and biomedical research, as well as new impetus for more collaborative forms of engagement in large-scale research. However, this also surfaces a variety of ethical issues that both fall outside of and build upon the standard human subjects concerns in bioethics. This article provides background on citizen science, examples of current projects in the field, and discussion of established and emerging ethical issues for (...)
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  • Mode 2 Knowledge Production in the Context of Medical Research: A Call for Further Clarifications.Hojjat Soofi - 2018 - Journal of Bioethical Inquiry 15 (1):23-27.
    The traditional researcher-driven environment of medical knowledge production is losing its dominance with the expansion of, for instance, community-based participatory or participant-led medical research. Over the past few decades, sociologists of science have debated a shift in the production of knowledge from traditional discipline-based to more socially embedded and transdisciplinary frameworks. Recently, scholars have tried to show the relevance of Mode 2 knowledge production to medical research. However, the existing literature lacks detailed clarifications on how a model of Mode 2 (...)
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