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Eric T. Juengst [35]Eric Thomas Juengst [2]
  1.  15
    The Promise and Reality of Public Engagement in the Governance of Human Genome Editing Research.John M. Conley, R. Jean Cadigan, Arlene M. Davis, Eric T. Juengst, Kriste Kuczynski, Rami Major, Hayley Stancil, Julio Villa-Palomino, Margaret Waltz & Gail E. Henderson - 2023 - American Journal of Bioethics 23 (7):9-16.
    This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements (...)
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  2.  56
    Citizen science or scientific citizenship? Disentangling the uses of public engagement rhetoric in national research initiatives.J. Patrick Woolley, Michelle L. McGowan, Harriet J. A. Teare, Victoria Coathup, Jennifer R. Fishman, Richard A. Settersten, Sigrid Sterckx, Jane Kaye & Eric T. Juengst - 2016 - BMC Medical Ethics 17 (1):1.
    The language of “participant-driven research,” “crowdsourcing” and “citizen science” is increasingly being used to encourage the public to become involved in research ventures as both subjects and scientists. Originally, these labels were invoked by volunteer research efforts propelled by amateurs outside of traditional research institutions and aimed at appealing to those looking for more “democratic,” “patient-centric,” or “lay” alternatives to the professional science establishment. As mainstream translational biomedical research requires increasingly larger participant pools, however, corporate, academic and governmental research programs (...)
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  3. Can Enhancement Be Distinguished from Prevention in Genetic Medicine?Eric T. Juengst - 1997 - Journal of Medicine and Philosophy 22 (2):125-142.
    In discussions of the ethics of human gene therapy, it has become standard to draw a distinction between the use of human gene transfer techniques to treat health problems and their use to enhance or improve normal human traits. Some dispute the normative force of this distinction by arguing that it is undercut by the legitimate medical use of human gene transfer techniques to prevent disease - such as genetic engineering to bolster immune function, improve the efficiency of DNA repair, (...)
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  4.  47
    Crowdsourcing the Moral Limits of Human Gene Editing?Eric T. Juengst - 2017 - Hastings Center Report 47 (3):15-23.
    In 2015, a flourish of “alarums and excursions” by the scientific community propelled CRISPR/Cas9 and other new gene-editing techniques into public attention. At issue were two kinds of potential gene-editing experiments in humans: those making inheritable germ-line modifications and those designed to enhance human traits beyond what is necessary for health and healing. The scientific consensus seemed to be that while research to develop safe and effective human gene editing should continue, society's moral uncertainties about these two kinds of experiments (...)
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  5.  28
    Big data, open science and the brain: lessons learned from genomics.Suparna Choudhury, Jennifer R. Fishman, Michelle L. McGowan & Eric T. Juengst - 2014 - Frontiers in Human Neuroscience 8.
  6.  20
    Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice.Gabriel Lázaro-Muñoz, John M. Conley, Arlene M. Davis, Marcia Van Riper, Rebecca L. Walker & Eric T. Juengst - 2015 - American Journal of Bioethics 15 (7):3-14.
    Advances in genomics have led to calls for developing population-based preventive genomic sequencing programs with the goal of identifying genetic health risks in adults without known risk factors. One critical issue for minimizing the harms and maximizing the benefits of PGS is determining the kind and degree of control individuals should have over the generation, use, and handling of their genomic information. In this article we examine whether PGS programs should offer individuals the opportunity to selectively opt out of the (...)
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  7.  22
    Personalized Genomic Medicine and the Rhetoric of Empowerment.Eric T. Juengst, Michael A. Flatt & Richard A. Settersten - 2012 - Hastings Center Report 42 (5):34-40.
    A decade after the completion of the Human Genome Project, the widespread appeal of personalized genomic medicine's vision and potential virtues for health care remains compelling. Advocates argue that our current medical regime “is in crisis as it is expensive, reactive, inefficient, and focused largely on one size fits all treatments for events of late stage disease.” What is revolutionary about this kind of medicine, its advocates maintain, is that it promises to resolve that crisis by simultaneously increasing the ability (...)
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  8.  40
    Germ-line Gene therapy: Back to basics.Eric T. Juengst - 1991 - Journal of Medicine and Philosophy 16 (6):587-592.
  9.  36
    Groups as gatekeepers to genomic research: Conceptually confusing, morally hazardous, and practically useless.Eric T. Juengst - 1998 - Kennedy Institute of Ethics Journal 8 (2):183-200.
    : Some argue that human groups have a stake in the outcome of population-genomics research and that the decision to participate in such research should therefore be subject to group permission. It is not possible, however, to obtain prior group permission, because the actual human groups under study, human demes, are unidentifiable before research begins. Moreover, they lack moral standing. If identifiable social groups with moral standing are used as proxies for demes, group approval could be sought, but at the (...)
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  10. From metagenomics to the metagenome: Conceptual change and the rhetoric of translational genomic research.Eric Thomas Juengst & John Edward Huss - 2009 - Genomics, Society, and Policy 5 (3):1-19.
    As the international genomic research community moves from the tool-making efforts of the Human Genome Project into biomedical applications of those tools, new metaphors are being suggested as useful to understanding how our genes work – and for understanding who we are as biological organisms. In this essay we focus on the Human Microbiome Project as one such translational initiative. The HMP is a new ‘metagenomic’ research effort to sequence the genomes of human microbiological flora, in order to pursue the (...)
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  11.  18
    Biogerontology, “Anti‐aging Medicine,” and the Challenges of Human Enhancement.Eric T. Juengst, Robert H. Binstock, Maxwell Mehlman, Stephen G. Post & Peter Whitehouse - 2003 - Hastings Center Report 33 (4):21-30.
    Slowing the aging process would be one of the most dramatic and momentous ways of enhancing human beings. It is also one that mainstream science is on the brink of pursuing. The state of the science, together with its possible impact, make it an important example for how to think about research into all enhancement technologies.
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  12.  13
    Sharing with Strangers: Governance Models for Borderless Genomic Research in a Territorial World.Eric T. Juengst & Eric M. Meslin - 2019 - Kennedy Institute of Ethics Journal 29 (1):67-95.
    Expectations are high around the world that more research on human genomic variation will improve the utility of “precision medicine” and help address population health disparities through “precision public health”. In large measure, these expectations rest on the premise that researchers will be able to share human DNA samples and genomic data freely and widely across the international scientific community. The human genomics community pioneered polices of early deposit of genomic research data into open databases to facilitate the exchange and (...)
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  13.  49
    Ethical and Legal Issues in Enhancement Research on Human Subjects.Maxwell J. Mehlman, Jessica W. Berg, Eric T. Juengst & Eric Kodish - 2011 - Cambridge Quarterly of Healthcare Ethics 20 (1):30--45.
    The United States, along with other nations and international organizations, has developed an elaborate system of ethical norms and legal rules to govern biomedical research using human subjects. These policies govern research that might provide direct health benefits to participants and research in which there is no prospect for participant health benefits. There has been little discussion, however, about how well these rules would apply to research designed to improve participants’ capabilities or characteristics beyond the goal of good health. When (...)
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  14.  57
    Self-Critical Federal Science? The Ethics Experiment within the U.S. Human Genome Project: ERIC T. JUENGST.Eric T. Juengst - 1996 - Social Philosophy and Policy 13 (2):63-95.
    On October 1, 1988, thirty-five years after co-discovering the structure of the DNA molecule, Dr. James Watson launched an unprecedented experiment in American science policy. In response to a reporter's question at a press conference, he unilaterally set aside 3 to 5 percent of the budget of the newly launched Human Genome Project to support studies of the ethical, legal, and social implications of new advances in human genetics. The Human Genome Project, by providing geneticists with the molecular maps of (...)
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  15.  28
    FACE Facts: Why Human Genetics Will Always Provoke Bioethics.Eric T. Juengst - 2004 - Journal of Law, Medicine and Ethics 32 (2):267-275.
    Over the last decade, more U.S. taxpayers money has been spent trying to anticipate and address the bioethical issues raised by advances in human genetics than any other set of issues in the field. Does this make sense? Not everyone in bioethics thinks so. Some think there are more important topics, like issues of health care justice, that will be neglected if the field continues to follow the money to dwell on the moral challenges of a relatively small community of (...)
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  16.  12
    Commentary: What "Community Review" Can and Cannot Do.Eric T. Juengst - 2000 - Journal of Law, Medicine and Ethics 28 (1):52-54.
  17.  22
    FACE Facts: Why Human Genetics Will Always Provoke Bioethics.Eric T. Juengst - 2004 - Journal of Law, Medicine and Ethics 32 (2):267-275.
    Over the last decade, more U.S. taxpayers money has been spent trying to anticipate and address the bioethical issues raised by advances in human genetics than any other set of issues in the field. Does this make sense? Not everyone in bioethics thinks so. Some think there are more important topics, like issues of health care justice, that will be neglected if the field continues to follow the money to dwell on the moral challenges of a relatively small community of (...)
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  18.  32
    What Research Ethics Should Learn from Genomics and Society Research: Lessons from the ELSI Congress of 2011.Gail E. Henderson, Eric T. Juengst, Nancy M. P. King, Kristine Kuczynski & Marsha Michie - 2012 - Journal of Law, Medicine and Ethics 40 (4):1008-1024.
    In much the same way that genomic technologies are changing the complexion of biomedical research, the issues they generate are changing the agenda of IRBs and research ethics. Many of the biggest challenges facing traditional research ethics today — privacy and confidentiality of research subjects; ownership, control, and sharing of research data; return of results and incidental findings; the relevance of group interests and harms; the scope of informed consent; and the relative importance of the therapeutic misconception — have become (...)
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  19.  9
    What “Community Review” Can and Cannot Do.Eric T. Juengst - 2000 - Journal of Law, Medicine and Ethics 28 (1):52-54.
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  20.  17
    Thresholds and boundaries in the disclosure of individual genetic research results.Lynn G. Dressler & Eric T. Juengst - 2006 - American Journal of Bioethics 6 (6):18 – 20.
  21.  7
    Genomic Research with the Newly Dead: A Crossroads for Ethics and Policy.Rebecca L. Walker, Eric T. Juengst, Warren Whipple & Arlene M. Davis - 2014 - Journal of Law, Medicine and Ethics 42 (2):220-231.
    Research uses of human bodies maintained by mechanical ventilation after being declared dead by neurological criteria, were first published in the early 1980s with a renewed interest in research on the newly or nearly dead occurring in about last decade. While this type of research may take many different forms, recent technologic advances in genomic sequencing along with high hopes for genomic medicine, have inspired interest in genomic research with the newly dead. For example, the Genotype-Tissue Expression program through the (...)
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  22.  17
    Grudging Trust and the Limits of Trustworthy Biorepository Curation.Karen M. Meagher, Eric T. Juengst & Gail E. Henderson - 2018 - American Journal of Bioethics 18 (4):23-25.
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  23.  30
    The Human Genome Project and Bioethics.Eric T. Juengst - 1991 - Kennedy Institute of Ethics Journal 1 (1):71-74.
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  24.  13
    Genomic Research with the Newly Dead: A Crossroads for Ethics and Policy.Rebecca L. Walker, Eric T. Juengst, Warren Whipple & Arlene M. Davis - 2014 - Journal of Law, Medicine and Ethics 42 (2):220-231.
    Recent advances in next generation sequencing along with high hopes for genomic medicine have inspired interest in genomic research with the newly dead. However, applicable law does not adequately determine ethical or policy responses to such research. In this paper we propose that such research stands at a crossroads between other more established biomedical clinical and research practices. In addressing the ethical and policy issues raised by a particular research project within our institution comparatively with these other practices, we illustrate (...)
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  25. Germ-line Gene therapy and the clinical ethos of medical Genetics.Gregory Fowler, Eric T. Juengst & Burke K. Zimmerman - 1989 - Theoretical Medicine and Bioethics 10 (2).
    Although the ability to perform gene therapy in human germ-line cells is still hypothetical, the rate of progress in molecular and cell biology suggests that it will only be a matter of time before reliable clinical techniques will be within reach. Three sets of arguments are commonly advanced against developing those techniques, respectively pointing to the clinical risks, social dangers and better alternatives. In this paper we analyze those arguments from the perspective of the client-centered ethos that traditionally governs practice (...)
     
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  26. Can Prevention be Distinguished from Enhancement in Genetic Medicine?Eric T. Juengst - 1997 - Journal of Medicine and Philosophy 22:125-142.
  27.  67
    Symposium report.Eric T. Juengst - 1980 - Theoretical Medicine and Bioethics 1 (3):379-379.
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  28.  16
    Community engagement in genetic research: The “slow code” of research ethics?Eric T. Juengst - 2003 - In Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. Martinus Nijhoff. pp. 181--197.
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  29. Alice Dreger and Bruce Wilson reply.Robert H. Binstock, Eric T. Juengst, Maxwell J. Mehlman & Stephen G. Post - forthcoming - Hastings Center Report.
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  30.  11
    In Honor of LeRoy Walters: Introduction from the Editors.Eric M. Meslin, Eric T. Juengst & Carol Mason Spicer - 2019 - Kennedy Institute of Ethics Journal 29 (1):67-95.
    Since the birth of bioethics, a persistent refrain has been that advances in science, technology, and health are occurring so quickly that they threaten to outpace society’s ability to understand and react to them. Genomics, big data, and synthetic biology preoccupy current scholarly and policy debates, just as organ transplantation, in vitro fertilization, human subjects research, and gene therapy did over the past forty years. But the history of bioethics is more than the topics it has addressed. It is also (...)
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  31.  16
    Extraordinary Litmus Tests.Robert H. Binstock, Eric T. Juengst, Maxwell J. Mehlman & Stephen G. Post - 2004 - Hastings Center Report 34 (2):4-5.
  32.  13
    Response to Open Peer Commentaries on “Looking for Trouble: Preventive Genomic Sequencing in the General Population and the Role of Patient Choice”.Gabriel Lázaro-Muñoz, John M. Conley, Arlene M. Davis, Marcia Van Riper, Rebecca L. Walker & Eric T. Juengst - 2015 - American Journal of Bioethics 15 (12):6-9.
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  33.  21
    GINA and Preemployment Criminal Background Checks.Shawneequa L. Callier, John Huss & Eric T. Juengst - 2010 - Hastings Center Report 40 (1):15-19.
  34.  8
    Genetic diagnostic, pedigree, and screening research.Eric T. Juengst & Aaron Goldenberg - 2008 - In Ezekiel J. Emanuel (ed.), The Oxford Textbook of Clinical Research Ethics. Oxford University Press. pp. 298.
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  35.  7
    Symposium report.Eric T. Juengst - 1980 - Metamedicine 1 (3):379-379.
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  36. Patterns of reasoning in medical genetics: An introduction.Eric T. Juengst - 1989 - Theoretical Medicine and Bioethics 10 (2):101-105.