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Jill O. Robinson [8]Jill Oliver Robinson [2]
  1.  47
    Researcher Views on Changes in Personality, Mood, and Behavior in Next-Generation Deep Brain Stimulation.Peter Zuk, Clarissa E. Sanchez, Kristin Kostick-Quenet, Katrina A. Muñoz, Lavina Kalwani, Richa Lavingia, Laura Torgerson, Demetrio Sierra-Mercado, Jill O. Robinson, Stacey Pereira, Simon Outram, Barbara A. Koenig, Amy L. McGuire & Gabriel Lázaro-Muñoz - 2023 - American Journal of Bioethics Neuroscience 14 (3):287-299.
    The literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (n = 23) involved in developing next-generation DBS systems, exploring their perspectives on ethics and policy topics including whether DBS/aDBS can cause such changes. The majority of researchers reported being aware of personality, mood, or behavioral (PMB) changes in recipients of DBS/aDBS. Researchers offered varying estimates of the frequency of PMB changes. A (...)
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  2.  35
    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.  42
    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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  4.  42
    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 14:578687.
    The expansion of research on deep brain stimulation (DBS) and adaptive DBS (aDBS) 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 (...)
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  5.  52
    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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  6.  23
    Public Perspectives on Investigative Genetic Genealogy: Findings from a National Focus Group Study.Jacklyn Dahlquist, Jill O. Robinson, Amira Daoud, Whitney Bash-Brooks, Amy L. McGuire, Christi J. Guerrini & Stephanie M. Fullerton - 2024 - AJOB Empirical Bioethics 15 (4):280-290.
    Background Investigative genetic genealogy (IGG) is a technique that involves uploading genotypes developed from perpetrator DNA left at a crime scene, or DNA from unidentified remains, to public genetic genealogy databases to identify genetic relatives and, through the creation of a family tree, the individual who was the source of the DNA. As policymakers demonstrate interest in regulating IGG, it is important to understand public perspectives on IGG to determine whether proposed policies are aligned with public attitudes.Methods We conducted eight (...)
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  7.  28
    Researchers’ Ethical Concerns About Using Adaptive Deep Brain Stimulation for Enhancement.Kristin Kostick-Quenet, Lavina Kalwani, Barbara Koenig, Laura Torgerson, Clarissa Sanchez, Katrina Munoz, Rebecca L. Hsu, Demetrio Sierra-Mercado, Jill Oliver Robinson, Simon Outram, Stacey Pereira, Amy McGuire, Peter Zuk & Gabriel Lazaro-Munoz - 2022 - Frontiers in Human Neuroscience 16.
    The capacity of next-generation closed-loop or adaptive deep brain stimulation devices to read and write shows great potential to effectively manage movement, seizure, and psychiatric disorders, and also raises the possibility of using aDBS to electively modulate mood, cognition, and prosociality. What separates aDBS from most neurotechnologies currently used for enhancement is that aDBS remains an invasive, surgically-implanted technology with a risk-benefit ratio significantly different when applied to diseased versus non-diseased individuals. Despite a large discourse about the ethics of enhancement, (...)
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  8.  19
    Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation.Mary A. Majumder, Matthew L. Blank, Janis Geary, Juli M. Bollinger, Christi J. Guerrini, Jill Oliver Robinson, Isabel Canfield, Robert Cook-Deegan & Amy McGuire - 2021 - J. Pers. Med 7 (11):646.
    Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...)
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  9. Experiences of Stigma in the United States During the COVID-19 Pandemic.Amanda M. Gutierrez, Sophie C. Schneider, Rubaiya Islam, Jill O. Robinson, Rebecca L. Hsu, Isabel Canfield & Christi J. Guerrini - forthcoming - Stigma and Health 1.
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  10.  26
    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.
    Background As citizen science continues to grow in popularity, there remains disagreement about what terms should be used to describe citizen science activities and participants. The question of how to self-identify has important ethical, political, and practical implications to the extent that shared language reflects a common ethos and goals and shapes behavior. Biomedical citizen science in particular has come to be associated with terms that reflect its unique activities, concerns, and priorities. To date, however, there is scant evidence regarding (...)
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