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  1. Ancillary Care, Genomics, and the Need and Opportunity for Community-Based Participatory Research.Kaija Zusevics - 2013 - American Journal of Bioethics 13 (2):54-56.
  • Ethical Framework for the Detection, Management and Communication of Incidental Findings in Imaging Studies, Building on an Interview Study of Researchers’ Practices and Perspectives.Eline M. Bunnik, Lisa van Bodegom, Wim Pinxten, Inez D. de Beaufort & Meike W. Vernooij - 2017 - BMC Medical Ethics 18 (1):10.
    As thousands of healthy research participants are being included in small and large imaging studies, it is essential that dilemmas raised by the detection of incidental findings are adequately handled. Current ethical guidance indicates that pathways for dealing with incidental findings should be in place, but does not specify what such pathways should look like. Building on an interview study of researchers’ practices and perspectives, we identified key considerations for the set-up of pathways for the detection, management and communication of (...)
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  • Partial Entrustment in Pragmatic Clinical Trials.Henry S. Richardson & Mildred K. Cho - 2020 - American Journal of Bioethics 20 (1):24-26.
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  • Ethics and Collateral Findings in Pragmatic Clinical Trials.Stephanie R. Morain, Kevin Weinfurt, Juli Bollinger, Gail Geller, Debra J. H. Mathews & Jeremy Sugarman - 2020 - American Journal of Bioethics 20 (1):6-18.
    Pragmatic clinical trials offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question, yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as?pragmatic clinical trial collateral findings,? (...)
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  • Management of Incidental Findings From Genetic Tests: Perspectives of Ethics Committee Members.Leigh Jackson Lesley Goldsmith - 2015 - Journal of Clinical Research and Bioethics 6 (3).
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  • Sharing the Knowledge: Sharing Aggregate Genomic Findings with Research Participants in Developing Countries.Angeliki Kerasidou - 2015 - Developing World Bioethics 15 (3):267-274.
    Returning research results to participants is recognised as an obligation that researchers should always try to fulfil. But can we ascribe the same obligation to researchers who conduct genomics research producing only aggregated findings? And what about genomics research conducted in developing countries? This paper considers Beskow's et al. argument that aggregated findings should also be returned to research participants. This recommendation is examined in the context of genomics research conducted in developing countries. The risks and benefits of attempting such (...)
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  • Public Health Doctors' Ancillary-Care Obligations.H. S. Richardson - 2010 - Public Health Ethics 3 (1):63-67.
    This comment on the case presented in ‘Cholera and Nothing More’ argues that the physicians at this public-health centre did not have an ordinary clinician's obligations to promote the health of the people who came to them for care, as they were instead set up to serve a laudable and urgent public-health goal, namely, controlling a cholera outbreak. It argues that, nonetheless, these physicians did have some limited moral duties to care for other diseases they encountered—some ancillary-care duties—arising from their (...)
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  • Do Researchers Have an Obligation to Actively Look for Genetic Incidental Findings?Catherine Gliwa & Benjamin E. Berkman - 2013 - American Journal of Bioethics 13 (2):32-42.
    The rapid growth of next-generation genetic sequencing has prompted debate about the responsibilities of researchers toward genetic incidental findings. Assuming there is a duty to disclose significant incidental findings, might there be an obligation for researchers to actively look for these findings? We present an ethical framework for analyzing whether there is a positive duty to look for genetic incidental findings. Using the ancillary care framework as a guide, we identify three main criteria that must be present to give rise (...)
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  • Genomic Incidental Findings: Reducing the Burden to Be Fair.Velizara Anastasova, Alessandro Blasimme, Sophie Julia & Anne Cambon-Thomsen - 2013 - American Journal of Bioethics 13 (2):52-54.
  • Ancillary Care Duties: The Demands of Justice.C. R. Hooper - 2010 - Journal of Medical Ethics 36 (11):708-711.
    Ancillary care is care that research participants need that is not essential to make the research safe or scientifically valid and is not needed to remedy injuries that eventuate as a result of the research project itself. Ancillary care duties have recently been defended on the grounds of beneficence, entrustment, utility and consent. Justice has also been mentioned as a possible basis of ancillary care duties, but little attention has been paid to this approach. In this paper, the author seeks (...)
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  • Incidental Findings in Low‐Resource Settings.Haley K. Sullivan & Benjamin E. Berkman - 2018 - Hastings Center Report 48 (3):20-28.
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  • Strategies to Guide the Return of Genomic Research Findings: An Australian Perspective.Lisa Eckstein & Margaret Otlowski - 2018 - Journal of Bioethical Inquiry 15 (3):403-415.
    In Australia, along with many other countries, limited guidance or other support strategies are currently available to researchers, institutional research ethics committees, and others responsible for making decisions about whether to return genomic findings with potential value to participants or their blood relatives. This lack of guidance results in onerous decision-making burdens—traversing technical, interpretative, and ethical dimensions—as well as uncertainty and inconsistencies for research participants. This article draws on a recent targeted consultation conducted by the Australian National Health and Medical (...)
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  • A Framework for Analyzing the Ethics of Disclosing Genetic Research Findings.Lisa Eckstein, Jeremy R. Garrett & Benjamin E. Berkman - 2014 - Journal of Law, Medicine and Ethics 42 (2):190-207.
    Over the past decade, there has been an extensive debate about whether researchers have an obligation to disclose genetic research findings, including primary and secondary findings. There appears to be an emerging (but disputed) view that researchers have some obligation to disclose some genetic findings to some research participants. The contours of this obligation, however, remain unclear. -/- As this paper will explore, much of this confusion is definitional or conceptual in nature. The extent of a researcher’s obligation to return (...)
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  • The Management of Incidental Findings in Neuro-Imaging Research: Framework and Recommendations.Erica K. Rangel - 2010 - Journal of Law, Medicine and Ethics 38 (1):117-126.
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  • Models of Consent to Return of Incidental Findings in Genomic Research.Paul S. Appelbaum, Erik Parens, Cameron R. Waldman, Robert Klitzman, Abby Fyer, Josue Martinez, W. Nicholson Price & Wendy K. Chung - 2014 - Hastings Center Report 44 (4):22-32.