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Amy L. McGuire [34]Amy McGuire [5]
  1.  50
    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 - 2020 - American Journal of Bioethics 20 (7):15-27.
    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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  2.  27
    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.  38
    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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  4.  17
    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.  46
    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.  11
    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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  7.  21
    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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  8.  9
    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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  9.  24
    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
    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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  11.  12
    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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  12.  8
    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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  13.  3
    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.
  14.  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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  15.  1
    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.
    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—and also more likely to conflict with those of institution-based researchers and other stakeholders—as (...)
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  16.  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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  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.  6
    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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  19.  2
    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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  20.  13
    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.
    Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...)
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  21.  12
    Currents in Contemporary Ethics.Cynthia Marietta & Amy L. McGuire - 2009 - Journal of Law, Medicine and Ethics 37 (2):369-374.
    Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...)
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  22.  3
    Data Sharing in the Context of Health-Related Citizen Science.Mary A. Majumder & Amy L. McGuire - 2020 - Journal of Law, Medicine and Ethics 48 (S1):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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  23.  15
    Currents in Contemporary Ethics.Cynthia Marietta & Amy L. McGuire - 2009 - Journal of Law, Medicine and Ethics 37 (2):369-374.
    Understanding of the human genome and its functional significance has increased exponentially since the completion of the Human Genome Project in 2003. The HGP fueled the discovery of more than 1,800 disease genes and paved the way for researchers to identify and test for genes suspected of causing inherited diseases. Currently, there are more than 1000 genetic tests for human diseases and conditions on the market. These tests can play an integral role in the delivery of health care by providing (...)
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  24.  30
    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).
  25.  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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  26.  25
    Consent: Informed, Simple, Implied and Presumed.Laurence B. McCullough, Amy L. McGuire & Simon N. Whitney - 2007 - American Journal of Bioethics 7 (12):49-50.
  27.  22
    The Ethical Health Lawyer.Amy L. McGuire, Mary A. Majumder & J. Richard Cheney - 2005 - Journal of Law, Medicine and Ethics 33 (3):603-607.
  28.  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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  29.  32
    Currents in Contemporary Bioethics.Amy L. McGuire, Melody J. Wang & Frank J. Probst - 2012 - Journal of Law, Medicine and Ethics 40 (4):1040-1046.
    Increasingly, genomic analysis is being utilized to diagnose children with developmental delay or dysmorphic facial features suggestive of a congenital disorder. Genetic testing has rapidly evolved, and the genome-wide tests that we use today are significantly different from the more targeted single-gene tests of the last decade. Chromosomal microarray analysis is now a first line test for children with multiple birth defects, children with intellectual impairment, and children with an unusual constellation of symptoms that do not fit with a known (...)
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  30.  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.
    The promise of personalized medicine and the quest for a greater understanding of the genetic basis of disease has transformed the research enterprise. The Director of the National Institutes of Health, Elias A. Zerhouni, M.D., recently predicted “that comprehensive, genomics- based health care will become the norm, with individualized preventive medicine and early detection of illnesses.” This excitement about the potential scientific and clinical advances that may come from genomics- based research has led several NIH institutions to launch initiatives for (...)
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  31.  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.
    In 1996, President Clinton offered a promissory vision for human genetics when he said: “I think it won't be too many years before parents will be able to go home from the hospital with their newborn babies with a genetic map in their hands that will tell them, here's what your child's future will likely be like.”The rapid evolution of genetic sequencing technologies has advanced that vision. In October 2006, the cost of sequencing an entire human genome was $10.4 million; (...)
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  32.  15
    Currents in Contemporary Bioethics.Amy L. McGuire, Melody J. Wang & Frank J. Probst - 2012 - Journal of Law, Medicine and Ethics 40 (4):1040-1046.
    Increasingly, genomic analysis is being utilized to diagnose children with developmental delay or dysmorphic facial features suggestive of a congenital disorder. Genetic testing has rapidly evolved, and the genome-wide tests that we use today are significantly different from the more targeted single-gene tests of the last decade. Chromosomal microarray analysis is now a first line test for children with multiple birth defects, children with intellectual impairment, and children with an unusual constellation of symptoms that do not fit with a known (...)
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  33.  17
    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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  34.  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.
    The promise of personalized medicine and the quest for a greater understanding of the genetic basis of disease has transformed the research enterprise. The Director of the National Institutes of Health, Elias A. Zerhouni, M.D., recently predicted “that comprehensive, genomics- based health care will become the norm, with individualized preventive medicine and early detection of illnesses.” This excitement about the potential scientific and clinical advances that may come from genomics- based research has led several NIH institutions to launch initiatives for (...)
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  35.  48
    Clearing the Mist.Amy McGuire - 2002 - American Journal of Bioethics 2 (4):1-2.
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  36.  17
    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.
    There is a national movement supporting the retention and use of bio-specimens from deceased individuals for the purpose of genetic testing. This manuscript discusses the significance of postmortem genetic testing in the context of death determination by medical examiners. We highlight distinctive concerns that are raised in the areas of consent, confidentiality, and return of results when genetic testing is performed as part of a public molecular autopsy. We believe our manuscript will contribute to the development of a robust ethical (...)
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  37.  4
    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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  38.  8
    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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