• Experiences of Stigma in the United States During the COVID-19 Pandemic
    with Amanda M. Gutierrez, Sophie C. Schneider, Rubaiya Islam, Jill O. Robinson, Rebecca L. Hsu, and Christi J. Guerrini
    Stigma and Health 1. forthcoming.
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    Challenges to Building a Gene Variant Commons to Assess Hereditary Cancer Risk: Results of a Modified Policy Delphi Panel Deliberation
    with Mary A. Majumder, Matthew L. Blank, Janis Geary, Juli M. Bollinger, Christi J. Guerrini, Jill Oliver Robinson, Robert Cook-Deegan, and Amy McGuire
    J. Pers. Med 7 (11): 646. 2021.
    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…Read more
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    A Cohort of Pirate Ships”: Biomedical Citizen Scientists’ Attitudes Toward Ethical Oversight
    with Meredith Trejo, Whitney Bash Brooks, Alex Pearlman, and Christi Guerrini
    Citizen Science: Theory and Practice 6 (1). 2021.
    As biomedical citizen science initiatives become more prevalent, the unique ethical issues that they raise are attracting policy attention. One issue identified as a significant concern is the ethical oversight of bottom-up biomedical citizen science projects that are designed and executed primarily or solely by members of the public. That is because the federal rules that require ethical oversight of research by institutional review boards generally do not apply to such projects, creating what …Read more
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    Donors, authors, and owners: how is genomic citizen science addressing interests in research outputs?
    with Christi J. Guerrini, Meaganne Lewellyn, Mary A. Majumder, Meredith Trejo, and Amy L. McGuire
    BMC Medical Ethics 20 (1): 1-13. 2019.
    Background Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger…Read more
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    How Biomedical Citizen Scientists Define What They Do: It’s All in the Name
    with Meredith Trejo, Jill O. Robinson, and Christi J. Guerrini
    AJOB Empirical Bioethics 12 (1): 63-70. 2021.
    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 prior…Read more