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Amy L. McGuire [33]Amy McGuire [4]
  1.  1
    Integrating Rules for Genomic Research, Clinical Care, Public Health Screening and DTC Testing: Creating Translational Law for Translational Genomics.Susan M. Wolf, Pilar N. Ossorio, Susan A. Berry, Henry T. Greely, Amy L. McGuire, Michelle A. Penny & Sharon F. Terry - 2020 - Journal of Law, Medicine and Ethics 48 (1):69-86.
    Human genomics is a translational field spanning research, clinical care, public health, and direct-to-consumer testing. However, law differs across these domains on issues including liability, consent, promoting quality of analysis and interpretation, and safeguarding privacy. Genomic activities crossing domains can thus encounter confusion and conflicts among these approaches. This paper suggests how to resolve these conflicts while protecting the rights and interests of individuals sequenced. Translational genomics requires this more translational approach to law.
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  2.  19
    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.  6
    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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  4.  6
    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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  5.  41
    Social Networkers' Attitudes Toward Direct-to-Consumer Personal Genome Testing.Amy McGuire, Christina Diaz, Tao Wang & Susan Hilsenbeck - 2009 - American Journal of Bioethics 9 (6-7):3-10.
    Purpose: This study explores social networkers' interest in and attitudes toward personal genome testing (PGT), focusing on expectations related to the clinical integration of PGT results. Methods: An online survey of 1,087 social networking users was conducted to assess 1) use and interest in PGT; 2) attitudes toward PGT companies and test results; and 3) expectations for the clinical integration of PGT. Descriptive statistics were calculated to summarize respondents' characteristics and responses. Results: Six percent of respondents have used PGT, 64% (...)
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  6.  2
    A Right to Privacy and Confidentiality: Ethical Medical Care for Patients in United States Immigration Detention.Amanda M. Gutierrez, Jacob D. Hofstetter, Emma L. Dishner, Elizabeth Chiao, Dilreet Rai & Amy L. McGuire - 2020 - Journal of Law, Medicine and Ethics 48 (1):161-168.
    Recently, John Doe, an undocumented immigrant who was detained by United States Immigration and Customs Enforcement, was admitted to a hospital off-site from a detention facility. Custodial officers accompanied Mr. Doe into the exam room and refused to leave as physicians examined him. In this analysis, we examine the ethical dilemmas this case brings to light concerning the treatment of patients in immigration detention and their rights to privacy. We analyze what US law and immigration detention standards allow regarding immigration (...)
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  7.  2
    Data Sharing in the Context of Health-Related Citizen Science.Mary A. Majumder & Amy L. McGuire - 2020 - Journal of Law, Medicine and Ethics 48 (1_suppl):167-177.
    As citizen science expands, questions arise regarding the applicability of norms and policies created in the context of conventional science. This article focuses on data sharing in the conduct of health-related citizen science, asking whether citizen scientists have obligations to share data and publish findings on par with the obligations of professional scientists. We conclude that there are good reasons for supporting citizen scientists in sharing data and publishing findings, and we applaud recent efforts to facilitate data sharing. At the (...)
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  8.  27
    Introduction: Sharing Data in a Medical Information Commons.Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai, Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):12-20.
    Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
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  9.  22
    Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.Patricia A. Deverka, Dierdre Gilmore, Jennifer Richmond, Zachary Smith, Rikki Mangrum, Barbara A. Koenig, Robert Cook-Deegan, Angela G. Villanueva, Mary A. Majumder & Amy L. McGuire - 2019 - Journal of Law, Medicine and Ethics 47 (1):70-87.
    A medical information commons is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.
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  10.  19
    A Conceptual Model for the Translation of Bioethics Research and Scholarship.Debra J. H. Mathews, D. Micah Hester, Jeffrey Kahn, Amy McGuire, Ross McKinney, Keith Meador, Sean Philpott-Jones, Stuart Youngner & Benjamin S. Wilfond - 2016 - Hastings Center Report 46 (5):34-39.
    While the bioethics literature demonstrates that the field has spent substantial time and thought over the last four decades on the goals, methods, and desired outcomes for service and training in bioethics, there has been less progress defining the nature and goals of bioethics research and scholarship. This gap makes it difficult both to describe the breadth and depth of these areas of bioethics and, importantly, to gauge their success. However, the gap also presents us with an opportunity to define (...)
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  11.  11
    Ethical Challenges Arising in the COVID-19 Pandemic: An Overview From the Association of Bioethics Program Directors (ABPD) Task Force.Amy L. McGuire, Mark P. Aulisio, F. Daniel Davis, Cheryl Erwin, Thomas D. Harter, Reshma Jagsi, Robert Klitzman, Robert Macauley, Eric Racine, Susan M. Wolf, Matthew Wynia & Paul Root Wolpe - forthcoming - American Journal of Bioethics:1-13.
    The COVID-19 pandemic has raised a host of ethical challenges, but key among these has been the possibility that health care systems might need to ration scarce critical care resources. Rationing p...
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  12.  14
    Who Owns the Data in a Medical Information Commons?Amy L. McGuire, Jessica Roberts, Sean Aas & Barbara J. Evans - 2019 - Journal of Law, Medicine and Ethics 47 (1):62-69.
    In this paper, we explore the perspectives of expert stakeholders about who owns data in a medical information commons and what rights and interests ought to be recognized when developing a governance structure for an MIC. We then examine the legitimacy of these claims based on legal and ethical analysis and explore an alternative framework for thinking about participants' rights and interests in an MIC.
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  13.  8
    Alienation, Quality of Life, and DBS for Depression.Peter Zuk, Amy L. McGuire & Gabriel Lázaro-Muñoz - 2018 - American Journal of Bioethics Neuroscience 9 (4):223-225.
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  14. Donors, Authors, and Owners: How is Genomic Citizen Science Addressing Interests in Research Outputs?Christi J. Guerrini, Meaganne Lewellyn, Mary A. Majumder, Meredith Trejo, Isabel Canfield & Amy L. McGuire - 2019 - BMC Medical Ethics 20 (1):1-13.
    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—and also more likely to conflict with those of institution-based researchers and other stakeholders—as participants (...)
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  15.  6
    Biomedical Citizen Science or Something Else? Reflections on Terms and Definitions.Christi J. Guerrini, Anna Wexler, Patricia J. Zettler & Amy L. McGuire - 2019 - American Journal of Bioethics 19 (8):17-19.
    Volume 19, Issue 8, August 2019, Page 17-19.
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  16.  26
    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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  17. “Snake-Oil,” “Quack Medicine,” and “Industrially Cultured Organisms:” Biovalue and the Commercialization of Human Microbiome Research. [REVIEW]Melody J. Slashinski, Sheryl A. McCurdy, Laura S. Achenbaum, Simon N. Whitney & Amy L. McGuire - 2012 - BMC Medical Ethics 13 (1):28-.
    Background Continued advances in human microbiome research and technologies raise a number of ethical, legal, and social challenges. These challenges are associated not only with the conduct of the research, but also with broader implications, such as the production and distribution of commercial products promising maintenance or restoration of good physical health and disease prevention. In this article, we document several ethical, legal, and social challenges associated with the commercialization of human microbiome research, focusing particularly on how this research is (...)
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  18.  10
    Currents in Contemporary Ethics Direct-to-Consumer Genetic Testing: Is It the Practice of Medicine?Cynthia Marietta & Amy L. McGuire - 2009 - Journal of Law, Medicine and Ethics 37 (2):369-374.
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  19.  12
    Currents in Contemporary Ethics.Cynthia Marietta & Amy L. McGuire - 2009 - Journal of Law, Medicine and Ethics 37 (2):369-374.
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  20.  15
    Currents in Contemporary Ethics.Cynthia Marietta & Amy L. McGuire - 2009 - Journal of Law, Medicine and Ethics 37 (2):369-374.
  21.  29
    Public Perceptions and Biobanking: What Does the Research Really Say?Christen Rachul, Amy McGuire & Timothy Caulfield - 2012 - Studies in Ethics, Law, and Technology 6 (1).
  22.  14
    Identifiability of DNA Data: The Need for Consistent Federal Policy.Amy L. McGuire - 2008 - American Journal of Bioethics 8 (10):75-76.
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  23.  17
    Consent: Informed, Simple, Implied and Presumed.Laurence B. McCullough, Amy L. McGuire & Simon N. Whitney - 2007 - American Journal of Bioethics 7 (12):49-50.
  24.  21
    The Ethical Health Lawyer.Amy L. McGuire, Mary A. Majumder & J. Richard Cheney - 2005 - Journal of Law, Medicine and Ethics 33 (3):603-607.
  25.  19
    The Ethical Health Lawyer.Amy L. McGuire, Mary A. Majumder & J. Richard Cheney - 2005 - Journal of Law, Medicine and Ethics 33 (3):603-607.
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  26.  30
    Currents in Contemporary Bioethics.Amy L. McGuire, Melody J. Wang & Frank J. Probst - 2012 - Journal of Law, Medicine and Ethics 40 (4):1040-1046.
  27.  16
    Currents in Contemporary Ethics: Meeting the Growing Demands of Genetic Research.Amy L. McGuire & Richard A. Gibbs - 2006 - Journal of Law, Medicine and Ethics 34 (4):809-812.
  28.  16
    Respect as an Organizing Normative Category for Research Ethics.Amy L. McGuire & Laurence B. McCullough - 2005 - American Journal of Bioethics 5 (1):W1 – W2.
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  29.  10
    Currents in Contemporary Bioethics.Amy L. McGuire, Melody J. Wang & Frank J. Probst - 2012 - Journal of Law, Medicine and Ethics 40 (4):1040-1046.
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  30.  8
    Neuroethics at 15: Keep the Kant but Add More Bacon.Gabriel Lázaro-Muñoz, Peter Zuk, Stacey Pereira, Kristin Kostick, Laura Torgerson, Demetrio Sierra-Mercado, Mary Majumder, J. Blumenthal-Barby, Eric A. Storch, Wayne K. Goodman & Amy L. McGuire - 2019 - American Journal of Bioethics Neuroscience 10 (3):97-100.
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  31.  3
    Currents in Contemporary Ethics: Meeting the Growing Demands of Genetic Research.Amy L. McGuire & Richard A. Gibbs - 2006 - Journal of Law, Medicine and Ethics 34 (4):809-812.
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  32.  16
    Ethical and Legal Challenges Associated with Public Molecular Autopsies.Quianta L. Moore, Mary A. Majumder, Lindsey K. Rutherford & Amy L. McGuire - 2016 - Journal of Law, Medicine and Ethics 44 (2):309-318.
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  33.  3
    Learning Health System — Moving From Ethical Frameworks to Practical Implementation.Stephanie R. Morain, Mary A. Majumder & Amy L. McGuire - 2019 - Journal of Law, Medicine and Ethics 47 (3):454-458.
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  34.  48
    Clearing the Mist.Amy McGuire - 2002 - American Journal of Bioethics 2 (4):1-2.
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  35.  7
    Pediatric Cancer Genetics Research and an Evolving Preventive Ethics Approach for Return of Results After Death of the Subject.Sarah Scollon, Katie Bergstrom, Laurence B. McCullough, Amy L. McGuire, Stephanie Gutierrez, Robin Kerstein, D. Williams Parsons & Sharon E. Plon - 2015 - Journal of Law, Medicine and Ethics 43 (3):529-537.
    The return of genetic research results after death in the pediatric setting comes with unique complexities. Researchers must determine which results and through which processes results are returned. This paper discusses the experience over 15 years in pediatric cancer genetics research of returning research results after the death of a child and proposes a preventive ethics approach to protocol development in order to improve the quality of return of results in pediatric genomic settings.
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  36.  6
    Clinical Integration of Next Generation Sequencing: A Policy Analysis.David Kaufman, Margaret Curnutte & Amy L. McGuire - 2014 - Journal of Law, Medicine and Ethics 42 (s1):5-8.
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