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Eric T. Juengst [34]Eric Juengst [13]Eric Thomas Juengst [2]
  1.  41
    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.  70
    From “Personalized” to “Precision” Medicine: The Ethical and Social Implications of Rhetorical Reform in Genomic Medicine.Eric Juengst, Michelle L. McGowan, Jennifer R. Fishman & Richard A. Settersten - 2016 - Hastings Center Report 46 (5):21-33.
    Since the late 1980s, the human genetics and genomics research community has been promising to usher in a “new paradigm for health care”—one that uses molecular profiling to identify human genetic variants implicated in multifactorial health risks. After the completion of the Human Genome Project in 2003, a wide range of stakeholders became committed to this “paradigm shift,” creating a confluence of investment, advocacy, and enthusiasm that bears all the marks of a “scientific/intellectual social movement” within biomedicine. Proponents of this (...)
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  3. (1 other version)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. Human Enhancement.Eric Juengst & Daniel Moseley - 2016 - The Stanford Encyclopedia of Philosophy.
    We examine a set of debates in Practical Ethics commonly labeled “the ethics of human enhancement.” Our essay focuses on (1) conceptual concerns about the limits of legitimate health care—the treatment vs. enhancement distinction, (2) moral considerations about fairness, authenticity, and human nature that are common in discussing the use of medical technologies in competitive institutions like sports and academia, and (3) broader issues that pertain to science policy and the distribution and regulation of medical technologies.
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  5.  49
    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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  6.  38
    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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  7.  36
    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.
  8.  77
    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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  9.  36
    Genomic Essentialism: Its Provenance and Trajectory as an Anticipatory Ethical Concern.Maya Sabatello & Eric Juengst - 2019 - Hastings Center Report 49 (S1):10-18.
    Since the inception of large‐scale human genome research, there has been much caution about the risks of exacerbating a number of socially dangerous attitudes linked to human genetics. These attitudes are usually labeled with one of a family of genetic or genomic “isms” or “ations” such as “genetic essentialism,” “genetic determinism,” “genetic reductionism,” “geneticization,” “genetic stigmatization,” and “genetic discrimination.” The psychosocial processes these terms refer to are taken to exacerbate several ills that are similarly labeled, from medical racism and psychological (...)
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  10.  47
    Advancing a Data Justice Framework for Public Health Surveillance.Mara Buchbinder, Eric Juengst, Stuart Rennie, Colleen Blue & David L. Rosen - 2022 - AJOB Empirical Bioethics 13 (3):205-213.
    Background Bioethical debates about privacy, big data, and public health surveillance have not sufficiently engaged the perspectives of those being surveilled. The data justice framework suggests that big data applications have the potential to create disproportionate harm for socially marginalized groups. Using examples from our research on HIV surveillance for individuals incarcerated in jails, we analyze ethical issues in deploying big data in public health surveillance. -/- Methods We conducted qualitative, semi-structured interviews with 24 people living with HIV who had (...)
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  11.  25
    Do Groups Have Moral Standing in Unregulated mHealth Research?Joon-Ho Yu & Eric Juengst - 2020 - Journal of Law, Medicine and Ethics 48 (S1):122-128.
    Biomedical research using data from participants’ mobile devices borrows heavily from the ethos of the “citizen science” movement, by delegating data collection and transmission to its volunteer subjects. This engagement gives volunteers the opportunity to feel like partners in the research and retain a reassuring sense of control over their participation. These virtues, in turn, give both grass-roots citizen science initiatives and institutionally sponsored mHealth studies appealing features to flag in recruiting participants from the public. But while grass-roots citizen science (...)
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  12.  64
    Germ-line Gene therapy: Back to basics.Eric T. Juengst - 1991 - Journal of Medicine and Philosophy 16 (6):587-592.
  13.  26
    Scraping the Web for Public Health Gains: Ethical Considerations from a ‘Big Data’ Research Project on HIV and Incarceration.Stuart Rennie, Mara Buchbinder, Eric Juengst, Lauren Brinkley-Rubinstein, Colleen Blue & David L. Rosen - 2020 - Public Health Ethics 13 (1):111-121.
    Web scraping involves using computer programs for automated extraction and organization of data from the Web for the purpose of further data analysis and use. It is frequently used by commercial companies, but also has become a valuable tool in epidemiological research and public health planning. In this paper, we explore ethical issues in a project that “scrapes” public websites of U.S. county jails as part of an effort to develop a comprehensive database to enhance HIV surveillance and improve continuity (...)
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  14.  31
    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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  15.  43
    Enhancing Cognition in the Intellectually Intact.Peter J. Whitehouse, Eric Juengst, Maxwell Mehlman & Thomas H. Murray - 1997 - Hastings Center Report 27 (3):14-22.
    As science learns more about how the brain works, and fails to work, the possibility for developing “cognition enhancers” becomes more plausible. And the demand for drugs that can help us think faster, remember more, and focus more keenly has already been demonstrated by the market success of drugs like Ritalin, which tames the attention span, and Prozac, which ups the competitive edge. The new drug Aricept, which improves memory, most likely will join them. Whether such drugs are good for (...)
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  16.  56
    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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  17.  33
    (1 other version)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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  18.  22
    (1 other version)Commentary: What "Community Review" Can and Cannot Do.Eric T. Juengst - 2000 - Journal of Law, Medicine and Ethics 28 (1):52-54.
  19.  29
    Are Parents Really Obligated to Learn as Much as Possible about Their Children's Genomes?Josephine Johnston & Eric Juengst - 2018 - Hastings Center Report 48 (S2):14-15.
    As new parents quickly learn, parenting always involves choosing your battles. Ideally, parents have the freedom to make those moral choices without the prejudice of an unreasonable or premature inflicted ought. Resolving the predictive uncertainties of genomic information is the professional responsibility of the biomedical community, just as clarifying the impact of global warming or assessing the risks of rising multidrug resistance is the responsibility of similar specialists. Until sequencing can give parents clear and meaningful information that they can use (...)
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  20.  32
    (1 other version)From metagenomics to the metagenome: Conceptual change and the rhetoric of translational genomic research.Eric Juengst & John 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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  21.  32
    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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  22.  88
    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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  23.  44
    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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  24.  39
    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.
  25.  17
    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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  26.  54
    The Human Genome Project and Bioethics.Eric T. Juengst - 1991 - Kennedy Institute of Ethics Journal 1 (1):71-74.
    In lieu of an abstract, here is a brief excerpt of the content:The Human Genome Project and BioethicsEric T. Juengst, Ph.D. (bio)The fifteen-year "human genome project" at the National Institutes of Health and the Department of Energy officially began on October 1, 1990. With it began a new dimension in federally supported scientific research: concurrent funding for work to anticipate the social consequences of the project's research and to develop policies to guide the use of the knowledge it produces. As (...)
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  27.  32
    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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  28.  24
    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. Boston: 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.  30
    Extraordinary Litmus Tests.Robert H. Binstock, Eric T. Juengst, Maxwell J. Mehlman & Stephen G. Post - 2004 - Hastings Center Report 34 (2):4-5.
  31. Human heritable genome editing and its governance: views of scientists and governance professionals.R. Jean Cadigan, Margaret Waltz, John M. Conley, Rami M. Major, Elizabeth K. Branch, Eric T. Juengst & Michael A. Flatt - 2024 - New Genetics and Society 43 (1).
    Heritable human genome editing has garnered significant attention in scholarly and lay media, yet questions remain about whether, when, and how heritable genome editing ought to proceed. Drawing on interviews with scientists who use genome editing in their research and professionals engaged in human genome editing governance efforts, we examine their views on the permissibility of heritable genome editing and the governance strategies they see as necessary and realistic. For both issues, we found divergent views from respondents. We place the (...)
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  32.  42
    GINA and Preemployment Criminal Background Checks.Shawneequa L. Callier, John Huss & Eric T. Juengst - 2010 - Hastings Center Report 40 (1):15-19.
  33.  14
    Genetic diagnostic, pedigree, and screening research.Eric T. Juengst & Aaron Goldenberg - 2008 - In Ezekiel J. Emanuel (ed.), The Oxford textbook of clinical research ethics. New York: Oxford University Press. pp. 298.
  34.  32
    Pure Glenn-fiditch. Review of Glenn McGee, beyond genetics: Putting the power of DNA to work in your life.Eric Juengst - 2004 - American Journal of Bioethics 4 (2):13 – 15.
  35.  34
    Population Genetic Research and Screening: Conceptual and Ethical Issues.Eric Juengst - 2007 - In Bonnie Steinbock (ed.), The Oxford handbook of bioethics. New York: Oxford University Press.
    Like all community-based public health campaigns, proposals to use genetic information to improve the health and welfare of communities, whether the old eugenic sterilization campaigns or the routinized population screening programs of today's ‘public health genetics’, can involve asking affected individuals to make special sacrifices or assume special responsibilities on behalf of the community's welfare. Moreover, unlike public health interventions that restrict individual liberties in order to prevent health problems which all community members risk more or less equally, genetic prevention (...)
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  36. (1 other version)Patterns of reasoning in medical genetics: An introduction.Eric T. Juengst - 1989 - Theoretical Medicine and Bioethics 10 (2):101-105.
  37.  14
    Subtracting Injury from Insult: Ethical Issues in the Use of Pharmaceutical Implants.Eric Juengst & Ronald Siegel - 1988 - Hastings Center Report 18 (6):41-46.
    The emergence of implantable drug delivery systems will allow us to produce the effects of psychosurgery and surgical sterilization without their irreversible invasions of bodily integrity. However, this clinical advantage does not resolve the most important ethical problems these surgeries face, and may even obscure them when they arise in the practice of drug implantation.
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  38.  79
    (1 other version)Symposium report.Eric T. Juengst - 1980 - Theoretical Medicine and Bioethics 1 (3):379-379.
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  39.  29
    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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