9 found
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  1.  37
    Mapping the Dimensions of Agency.Andreas Schönau, Ishan Dasgupta, Timothy Brown, Erika Versalovic, Eran Klein & Sara Goering - 2021 - American Journal of Bioethics Neuroscience 12 (2):172-186.
    Neural devices have the capacity to enable users to regain abilities lost due to disease or injury – for instance, a deep brain stimulator (DBS) that allows a person with Parkinson’s disease to regain the ability to fluently perform movements or a Brain Computer Interface (BCI) that enables a person with spinal cord injury to control a robotic arm. While users recognize and appreciate the technologies’ capacity to maintain or restore their capabilities, the neuroethics literature is replete with examples of (...)
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  2.  37
    What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
    A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.
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  3.  10
    Asking questions that matter – Question prompt lists as tools for improving the consent process for neurotechnology clinical trials.Andreas Schönau, Sara Goering, Erika Versalovic, Natalia Montes, Tim Brown, Ishan Dasgupta & Eran Klein - 2022 - Frontiers in Human Neuroscience 16.
    Implantable neurotechnology devices such as Brain Computer Interfaces and Deep Brain Stimulators are an increasing part of treating or exploring potential treatments for neurological and psychiatric disorders. While only a few devices are approved, many promising prospects for future devices are under investigation. The decision to participate in a clinical trial can be challenging, given a variety of risks to be taken into consideration. During the consent process, prospective participants might lack the language to consider those risks, feel unprepared, or (...)
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  4.  17
    Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
    Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
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  5.  10
    Included but Still Invisible?: Considering the Protection-Inclusion Dilemma in Qualitative Research Findings.Erika Versalovic, Asad Beck & Timothy Emmanuel Brown - 2023 - American Journal of Bioethics 23 (6):97-100.
    The COVID-19 pandemic’s disproportionate harm to racialized communities and increased public attention to the deaths of Black people at the hands of police (Elijah McClain, Breonna Taylor, George F...
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  6.  10
    Data, Privacy, and Agency: Beyond Transparency to Empowerment.Erika Versalovic, Sara Goering & Eran Klein - 2022 - American Journal of Bioethics 22 (7):63-65.
    Separation-based accounts of privacy define privacy as being left alone and unaccessed. Pyrrho et al. propose a more control-based account where privacy is about having the age...
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  7.  8
    “Who Will I Be?”: Relational Identity, Living with Amyotrophic Lateral Sclerosis, and Future-Oriented Decisionmaking.Erika Versalovic & Eran Klein - 2020 - Cambridge Quarterly of Healthcare Ethics 29 (4):617-629.
    Patients with amyotrophic lateral sclerosis (ALS) face many difficult, timing-sensitive decisions over the course of their illness, weighing present versus future harms and benefits. Supplemented by interviews with people with ALS, we argue for a relational approach to understanding these decisions and their effects on identity. We highlight two critical aspects of the patient–caregiver relationship: (1) the extent to which each may rely on the other leaves their wellbeing intimately intertwined and (2) patients often require others to help with the (...)
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  8. Ambiguous Agency as a Frame on Neural Device User Experience.Sara Goering, Erika Versalovic & Timothy Brown - 2023 - American Journal of Bioethics Neuroscience 14 (1):50-52.
    Haeusermann et al. (2023) provide a valuable ethnographic window into how RNS device users understand themselves in relation to refractory epilepsy, the medications for it, and the use of the impla...
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  9.  10
    Integrating Equity Work throughout Bioethics.Eran Klein, Erika Versalovic, Andreas Schönau, Natalia Montes, Darcy McCusker, Timothy Emmanuel Brown & Sara Goering - 2022 - American Journal of Bioethics 22 (1):26-27.
    As members of a neuroethics research group funded by the NIH, we echo the call from Fabi and Goldberg for greater funding parity between the ethics of specialized medical technologies and br...
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