21 found
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  1.  27
    Managing Incidental Findings in Human Subjects Research: Analysis and Recommendations.Susan M. Wolf, Frances P. Lawrenz, Charles A. Nelson, Jeffrey P. Kahn, Mildred K. Cho, Ellen Wright Clayton, Joel G. Fletcher, Michael K. Georgieff, Dale Hammerschmidt, Kathy Hudson, Judy Illes, Vivek Kapur, Moira A. Keane, Barbara A. Koenig, Bonnie S. LeRoy, Elizabeth G. McFarland, Jordan Paradise, Lisa S. Parker, Sharon F. Terry, Brian Van Ness & Benjamin S. Wilfond - 2008 - Journal of Law, Medicine and Ethics 36 (2):219-248.
    No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...)
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  2.  5
    Have We Asked Too Much of Consent?Barbara A. Koenig - 2014 - Hastings Center Report 44 (4):33-34.
  3.  6
    Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.Josephine Johnston, John D. Lantos, Aaron Goldenberg, Flavia Chen, Erik Parens & Barbara A. Koenig - 2018 - Hastings Center Report 48 (S2):S2-S6.
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  4.  11
    Pragmatic Tools for Sharing Genomic Research Results with the Relatives of Living and Deceased Research Participants.Susan M. Wolf, Emily Scholtes, Barbara A. Koenig, Gloria M. Petersen, Susan A. Berry, Laura M. Beskow, Mary B. Daly, Conrad V. Fernandez, Robert C. Green, Bonnie S. LeRoy, Noralane M. Lindor, P. Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness & Benjamin S. Wilfond - 2018 - Journal of Law, Medicine and Ethics 46 (1):87-109.
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  5.  5
    If you build it, they will come: unintended future uses of organised health data collections.Kieran C. O’Doherty, Emily Christofides, Jeffery Yen, Heidi Beate Bentzen, Wylie Burke, Nina Hallowell, Barbara A. Koenig & Donald J. Willison - 2016 - BMC Medical Ethics 17 (1):54.
    Health research increasingly relies on organized collections of health data and biological samples. There are many types of sample and data collections that are used for health research, though these are collected for many purposes, not all of which are health-related. These collections exist under different jurisdictional and regulatory arrangements and include: 1) Population biobanks, cohort studies, and genome databases 2) Clinical and public health data 3) Direct-to-consumer genetic testing 4) Social media 5) Fitness trackers, health apps, and biometric data (...)
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  6.  5
    Should Researchers Offer Results to Family Members of Cancer Biobank Participants? A Mixed-Methods Study of Proband and Family Preferences.Deborah R. Gordon, Carmen Radecki Breitkopf, Marguerite Robinson, Wesley O. Petersen, Jason S. Egginton, Kari G. Chaffee, Gloria M. Petersen, Susan M. Wolf & Barbara A. Koenig - 2019 - Ajob Empirical Bioethics 10 (1):1-22.
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  7.  8
    Linking Broad Consent to Biobank Governance: Support From a Deliberative Public Engagement in California.Sarah B. Garrett, Daniel Dohan & Barbara A. Koenig - 2015 - American Journal of Bioethics 15 (9):56-57.
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  8.  41
    The Difference That Culture Can Make in End-of-Life Decisionmaking.H. Eugene Hern, Barbara A. Koenig, Lisa Jean Moore & Patricia A. Marshall - 1998 - Cambridge Quarterly of Healthcare Ethics 7 (1):27-40.
    Cultural difference has been largely ignored within bioethics, particularly within the end-of-life discourses and practices that have developed over the past two decades in the U.S. healthcare system. Yet how should culturebe taken into account?
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  9.  18
    Understanding the Practice of Ethics Consultation: Results of an Ethnographic Multi-Site Study.Susan E. Kelly, Patricia A. Marshall, Lee M. Sanders, Thomas A. Raffin & Barbara A. Koenig - 1997 - Journal of Clinical Ethics 8 (2):136-149.
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  10.  7
    Sequencing Newborns: A Call for Nuanced Use of Genomic Technologies.Josephine Johnston, John D. Lantos, Aaron Goldenberg, Flavia Chen, Erik Parens, Barbara A. Koenig, Members of the Nsight Ethics & Policy Advisory Board - forthcoming - Zygon.
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  11.  19
    Understanding Variations in Secondary Findings Reporting Practices Across U.S. Genome Sequencing Laboratories.Sara L. Ackerman & Barbara A. Koenig - 2018 - Ajob Empirical Bioethics 9 (1):48-57.
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  12. Anthropology and Bioethics.Barbara A. Koenig - 2003 - Cambridge Quarterly of Healthcare Ethics 7:68-76.
     
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  13.  23
    Cultural Aspects of Nondisclosure.Celia J. Orona, Barbara A. Koenig & Anne J. Davis - 1994 - Cambridge Quarterly of Healthcare Ethics 3 (3):338.
    A basic assumption in current western medicine is that good healthcare involves informed choices. Indeed, making informed choices is not only viewed as “good practice” but a right to which each individual is entitled, a perspective only recently developed in the medical field.Moreover, in the case of ethical decisions, much of the discussion on the role of the family is cast within the autonomy paradigm of contemporary bioethics; that is, family members provide emotional support but do not make decisions for (...)
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  14.  6
    Why Not Grant Primacy to the Family?Barbara A. Koenig - 2001 - American Journal of Bioethics 1 (3):33-34.
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  15.  24
    Dead Donors and the "Shortage" of Human Organs: Are We Missing the Point?Barbara A. Koenig - 2003 - American Journal of Bioethics 3 (1):26 – 27.
  16.  24
    AJOB Empirical Bioethics: A Home for Empirical Bioethics Scholarship.Chris Feudtner, Jeremy Sugarman, Barbara A. Koenig, Peter A. Ubel, Richard F. Ittenbach, Laura Weiss Roberts & Laurence B. McCullough - 2014 - Ajob Empirical Bioethics 5 (1):1-2.
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  17.  9
    Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.Susan M. Wolf, Rebecca Branum, Barbara A. Koenig, Gloria M. Petersen, Susan A. Berry, Laura M. Beskow, Mary B. Daly, Conrad V. Fernandez, Robert C. Green, Bonnie S. LeRoy, Noralane M. Lindor, P. Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness & Benjamin S. Wilfond - 2015 - Journal of Law, Medicine and Ethics 43 (3):440-463.
    Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.
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  18.  7
    Mapping the Ethics of Translational Genomics: Situating Return of Results and Navigating the Research‐Clinical Divide.Susan M. Wolf, Wylie Burke & Barbara A. Koenig - 2015 - Journal of Law, Medicine and Ethics 43 (3):486-501.
    Both bioethics and law have governed human genomics by distinguishing research from clinical practice. Yet the rise of translational genomics now makes this traditional dichotomy inadequate. This paper pioneers a new approach to the ethics of translational genomics. It maps the full range of ethical approaches needed, proposes a “layered” approach to determining the ethics framework for projects combining research and clinical care, and clarifies the key role that return of results can play in advancing translation.
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  19.  7
    The Power (and Limits) of Proximity.Barbara A. Koenig - 1996 - Hastings Center Report 26 (6):30-32.
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  20.  6
    Preferences Regarding Return of Genomic Results to Relatives of Research Participants, Including After Participant Death: Empirical Results From a Cancer Biobank.Carmen Radecki Breitkopf, Gloria M. Petersen, Susan M. Wolf, Kari G. Chaffee, Marguerite E. Robinson, Deborah R. Gordon, Noralane M. Lindor & Barbara A. Koenig - 2015 - Journal of Law, Medicine and Ethics 43 (3):464-475.
    Data are lacking with regard to participants' perspectives on return of genetic research results to relatives, including after the participant's death. This paper reports descriptive results from 3,630 survey respondents: 464 participants in a pancreatic cancer biobank, 1,439 family registry participants, and 1,727 healthy individuals. Our findings indicate that most participants would feel obligated to share their results with blood relatives while alive and would want results to be shared with relatives after their death.
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  21.  11
    Systematic Review of Ethics Consultation: A Route to Curriculum Development in Post-Graduate Medical Education.Paul S. Mueller & Barbara A. Koenig - 2006 - American Journal of Bioethics 6 (4):21 – 23.
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