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John T. Wilbanks [6]John Wilbanks [3]
  1.  11
    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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  2.  6
    Unregulated Health Research Using Mobile Devices: Ethical Considerations and Policy Recommendations.Mark A. Rothstein, John T. Wilbanks, Laura M. Beskow, Kathleen M. Brelsford, Kyle B. Brothers, Megan Doerr, Barbara J. Evans, Catherine M. Hammack-Aviran, Michelle L. McGowan & Stacey A. Tovino - 2020 - Journal of Law, Medicine and Ethics 48 (1_suppl):196-226.
    Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...)
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  3.  6
    Design Issues in E-Consent.John Wilbanks - 2018 - Journal of Law, Medicine and Ethics 46 (1):110-118.
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  4.  33
    Introduction: Sharing Data in a Medical Information Commons.Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai, Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):12-20.
    Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
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  5.  3
    Electronic Informed Consent in Mobile Applications Research.John T. Wilbanks - 2020 - Journal of Law, Medicine and Ethics 48 (1_suppl):147-153.
    The article covers electronic informed consent from different dimensions so that practitioners might understand the history, regulation, and current status of eIC. It covers the transition of informed consent to electronic screens and the implications of that transition in terms of design, costs, and data analysis. The article explores the limits of regulation mandating eIC for mobile application research, and addresses some of the broader social context around eIC.
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  6.  3
    Introduction: Unregulated Health Research Using Mobile Devices.Mark A. Rothstein & John T. Wilbanks - 2020 - Journal of Law, Medicine and Ethics 48 (1_suppl):7-8.
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  7.  13
    Citizen Science on Your Smartphone: An ELSI Research Agenda.Mark A. Rothstein, John T. Wilbanks & Kyle B. Brothers - 2015 - Journal of Law, Medicine and Ethics 43 (4):897-903.
    The Journal of Law, Medicine &Ethics, Volume 43, Issue 4, Page 897-903, Winter 2015.
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  8. Assessing the Consequences of Decentralizing Biomedical Research.Lara M. Mangravite, John T. Wilbanks & Brian M. Bot - 2019 - Big Data and Society 6 (1).
    Advancements in technology are shifting the ways that biomedical data are collected, managed, and used. The pervasiveness of connected devices is expanding the types of information that are defined as ‘health data.’ Additionally, cloud-based mechanisms for data collection and distribution are shifting biomedical research away from traditional infrastructure towards a more distributed and interconnected ecosystem. This shift provides an opportunity for us to reimagine the roles of scientists and participants in health research, with the potential to more meaningfully engage in (...)
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  9. Publishing Science on the Web.John Wilbanks - forthcoming - Common Knowledge.
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