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  1. Where are human subjects in Big Data research? The emerging ethics divide.Kate Crawford & Jacob Metcalf - 2016 - Big Data and Society 3 (1).
    There are growing discontinuities between the research practices of data science and established tools of research ethics regulation. Some of the core commitments of existing research ethics regulations, such as the distinction between research and practice, cannot be cleanly exported from biomedical research to data science research. Such discontinuities have led some data science practitioners and researchers to move toward rejecting ethics regulations outright. These shifts occur at the same time as a proposal for major revisions to the Common Rule—the (...)
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  • Exploring Understanding of “Understanding”: The Paradigm Case of Biobank Consent Comprehension.Laura M. Beskow & Kevin P. Weinfurt - 2019 - American Journal of Bioethics 19 (5):6-18.
    Data documenting poor understanding among research participants and real-time efforts to assess comprehension in large-scale studies are focusing new attention on informed consent comprehension. Within the context of biobanking consent, we previously convened a multidisciplinary panel to reach consensus about what information must be understood for a prospective participant’s consent to be considered valid. Subsequently, we presented them with data from another study showing that many U.S. adults would fail to comprehend the information the panel had deemed essential. When asked (...)
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  • Design Issues in E-Consent.John Wilbanks - 2018 - Journal of Law, Medicine and Ethics 46 (1):110-118.
    Electronic informed consent represents an opportunity to redesign the way that participants understand and elect to enroll in clinical research studies. However, electronic consent faces certain barriers common to all informed consent processes and other barriers specific to the technical environment. At Sage Bionetworks, we designed an electronic consent process as a software product and released it as an open source tool. We believe that using contemporary design processes to intentionally create cognitive friction, where potential study participants are confronted with (...)
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