42 found
Order:
  1.  88
    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...
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   37 citations  
  2.  26
    Ethics Education for Healthcare Professionals in the Era of ChatGPT and Other Large Language Models: Do We Still Need It?Vasiliki Rahimzadeh, Kristin Kostick-Quenet, Jennifer Blumenthal Barby & Amy L. McGuire - 2023 - American Journal of Bioethics 23 (10):17-27.
    ChatGPT has taken the academic community by storm (Cotton, Cotton, and Shipway 2023; Cox and Tzoc 2023; Sullivan, Kelly, and McLaughlan 2023). Since its release in November 2022, chatGPT has predic...
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   12 citations  
  3.  40
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   12 citations  
  4.  35
    Are Psychedelic Experiences Transformative? Can We Consent to Them?Brent M. Kious, Andrew Peterson & Amy L. McGuire - 2024 - Perspectives in Biology and Medicine 67 (1):143-154.
    ABSTRACT:Psychedelic substances have great promise for the treatment of many conditions, and they are the subject of intensive research. As with other medical treatments, both research and clinical use of psychedelics depend on our ability to ensure informed consent by patients and research participants. However, some have argued that informed consent for psychedelic use may be impossible, because psychedelic experiences can be transformative in the sense articulated by L. A. Paul (2014). For Paul, transformative experiences involve either the acquisition of (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  5.  70
    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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   7 citations  
  6.  31
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   7 citations  
  7.  43
    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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  8.  38
    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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   6 citations  
  9.  35
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  10.  12
    Bio-Psycho-Spiritual Perspectives on Psychedelics: Clinical and Ethical Implications.Logan Neitzke-Spruill, Nese Devenot, Dominic Sisti, Lynnette A. Averill & Amy L. McGuire - 2024 - Perspectives in Biology and Medicine 67 (1):117-142.
    ABSTRACT:Psychedelics have again become a subject of widespread interest, owing to the reinvigoration of research into their traditional uses, possible medical applications, and social implications. As evidence for psychedelics' clinical potential mounts, the field has increasingly focused on searching for mechanisms to explain the effects of psychedelics and therapeutic efficacy of psychedelic-assisted therapy (PAT). This paper reviews three general frameworks that encompass several prominent models for understanding psychedelics' effects—specifically, neurobiological, psychological, and spiritual frameworks. Following our review, the implications of each (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  11.  34
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   5 citations  
  12.  27
    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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  13.  38
    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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  14.  36
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   3 citations  
  15.  52
    A Transformative Trip? Experiences of Psychedelic Use.Logan Neitzke-Spruill, Caroline Beit, Jill Robinson, Kai Blevins, Joel Reynolds, Nicholas G. Evans & Amy L. McGuire - 2024 - Neuroethics 17 (33):1-21.
    Psychedelic experiences are often compared to “transformative experiences” due to their potential to change how people think and behave. This study empirically examines whether psychedelic experiences constitute transformative experiences. Given psychedelics’ prospective applications as treatments for mental health disorders, this study also explores neuroethical issues raised by the possibility of biomedically directed transformation—namely, consent and moral psychopharmacology. To achieve these aims, we used both inductive and deductive coding techniques to analyze transcripts from interviews with 26 participants in psychedelic retreats. Results (...)
    Direct download (5 more)  
     
    Export citation  
     
    Bookmark  
  16. 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.
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  17.  18
    Deciding with Others: Interdependent Decision‐Making.Emily A. Largent, Justin Clapp, Jennifer S. Blumenthal-Barby, Christine Grady, Amy L. McGuire, Jason Karlawish, Joshua D. Grill, Shana D. Stites & Andrew Peterson - 2022 - Hastings Center Report 52 (6):23-32.
    Over the course of human life, health care decision‐making is often interdependent. In this article, we use “interdependence” to refer to patients’ engagement of nonclinicians—for example, family members or trusted friends—to reach health care decisions. Interdependence, we suggest, is common for patients in all stages of life, from early childhood to late adulthood. This view contrasts with the common bioethical assumption that medical decisions are either wholly independent or dependent and that independence or dependence is tightly coupled with a person's (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  18.  48
    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.
    No categories
    Direct download  
     
    Export citation  
     
    Bookmark   3 citations  
  19.  26
    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.
    In their article “The Rise of Citizen Science in Health and Biomedical Research,” Wiggins and Wilbanks (2019) present a new typology for understanding the complex landscape of health and biomedical...
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  20.  19
    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 (...)
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  21.  15
    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 - forthcoming - AJOB Empirical Bioethics.
    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 (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  22.  38
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  23.  20
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  24.  19
    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 (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  25.  26
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  26.  13
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  27.  21
    Identifiability of DNA Data: The Need for Consistent Federal Policy.Amy L. McGuire - 2008 - American Journal of Bioethics 8 (10):75-76.
    Biological samples are routinely collected and used in biomedical research. As Weir and Olick (2004) point out in their book The Stored Tissue Issue, there are four ways in which samples can be sto...
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   4 citations  
  28.  38
    Consent: Informed, Simple, Implied and Presumed.Laurence B. McCullough, Amy L. McGuire & Simon N. Whitney - 2007 - American Journal of Bioethics 7 (12):49-50.
  29.  29
    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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  30.  41
    Respect as an organizing normative category for research ethics.Amy L. McGuire & Laurence B. McCullough - 2005 - American Journal of Bioethics 5 (1):W1 – W2.
    Rosamond Rhodes calls for a reconceptualization of research ethics and a fundamental shift in attitude toward both research subjects and scientific investigators. She recognizes the limits of the e...
    Direct download (4 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  31.  31
    The Ethical Health Lawyer.Amy L. McGuire, Mary A. Majumder & J. Richard Cheney - 2005 - Journal of Law, Medicine and Ethics 33 (3):603-607.
  32.  32
    The Ethical Health Lawyer.Amy L. McGuire, Mary A. Majumder & J. Richard Cheney - 2005 - Journal of Law, Medicine and Ethics 33 (3):603-607.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   2 citations  
  33.  20
    “Idealists and capitalists”: ownership attitudes and preferences in genomic citizen science.Christi J. Guerrini, Jorge L. Contreras, Whitney Bash Brooks, Isabel Canfield, Meredith Trejo & Amy L. McGuire - 2022 - New Genetics and Society 41 (2):74-95.
    The perspectives of genomic citizen scientists on ownership of research outputs are not well understood, yet they are useful for identifying alignment of participant expectations and project practices and can help guide efforts to develop innovative tools and strategies for managing ownership claims. Here, we report findings from 52 interviews conducted in 2018 and 2019 to understand genomic citizen science stakeholders’ conceptualizations of, experiences with, and preferences for ownership of research outputs. Interviewees identified four approaches for recognizing genomic citizen scientists’ (...)
    No categories
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  34.  10
    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; (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  35.  38
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  36.  23
    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 (...)
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  37.  9
    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 (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark   1 citation  
  38.  13
    Increasing physician participation as subjects in scientific and quality improvement research.Amy L. McGuire & Sylvia J. Hysong - 2022 - BMC Medical Ethics 23 (1):1–4.
    Background The twenty-first century has witnessed an exponential increase in healthcare quality research. As such activities become more prevalent, physicians are increasingly needed to participate as subjects in research and quality improvement (QI) projects. This raises an important ethical question: how should physicians be remunerated for participating as research and/or QI subjects? Financial versus non-monetary incentives for participation Research suggests participation in research and QI is often driven by conditional altruism, the idea that although initial interest in enrolling in research (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  39.  27
    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 (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  40.  15
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  41.  25
    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.
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  42. “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 (...)
    Direct download (10 more)  
     
    Export citation  
     
    Bookmark   3 citations