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  1.  16
    Genomic Data-Sharing Practices.Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):31-40.
    Making data broadly accessible is essential to creating a medical information commons. Transparency about data-sharing practices can cultivate trust among prospective and existing MIC participants. We present an analysis of 34 initiatives sharing DNA-derived data based on public information. We describe data-sharing practices captured, including practices related to consent, privacy and security, data access, oversight, and participant engagement. Our results reveal that data-sharing initiatives have some distance to go in achieving transparency.
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  2.  2
    Researcher Perspectives on Ethical Considerations in Adaptive Deep Brain Stimulation Trials.Katrina A. Muñoz, Kristin Kostick, Clarissa Sanchez, Lavina Kalwani, Laura Torgerson, Rebecca Hsu, Demetrio Sierra-Mercado, Jill O. Robinson, Simon Outram, Barbara A. Koenig, Stacey Pereira, Amy McGuire, Peter Zuk & Gabriel Lázaro-Muñoz - 2020 - Frontiers in Human Neuroscience 14.
  3.  7
    Researcher Perspectives on Data Sharing in Deep Brain Stimulation.Peter Zuk, Clarissa E. Sanchez, Kristin Kostick, Laura Torgerson, Katrina A. Muñoz, Rebecca Hsu, Lavina Kalwani, Demetrio Sierra-Mercado, Jill O. Robinson, Simon Outram, Barbara A. Koenig, Stacey Pereira, Amy L. McGuire & Gabriel Lázaro-Muñoz - 2020 - Frontiers in Human Neuroscience 14.
    The expansion of research on deep brain stimulation and adaptive DBS raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data or would (...)
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  4.  27
    When Bins Blur: Patient Perspectives on Categories of Results From Clinical Whole Genome Sequencing.Leila Jamal, Jill O. Robinson, Kurt D. Christensen, Jennifer Blumenthal-Barby, Melody J. Slashinski, Denise Lautenbach Perry, Jason L. Vassy, Julia Wycliff, Robert C. Green & Amy L. McGuire - 2017 - Ajob Empirical Bioethics 8 (2):82-88.
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  5.  8
    How Biomedical Citizen Scientists Define What They Do: It’s All in the Name.Meredith Trejo, Isabel Canfield, Jill O. Robinson & Christi J. Guerrini - 2021 - AJOB Empirical Bioethics 12 (1):63-70.
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