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  1. The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice.Clair Morrissey & Rebecca L. Walker - 2018 - Journal of Medicine and Philosophy 43 (1):22-43.
    Advances in DNA sequencing technology open new possibilities for public health genomics, especially in the form of general population preventive genomic sequencing. Such screening programs would sit at the intersection of public health and preventive health care, and thereby at once invite and resist the use of clinical ethics and public health ethics frameworks. Despite their differences, these ethics frameworks traditionally share a central concern for individual rights. We examine two putative individual rights—the right not to know, and the child’s (...)
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  • Defining Categories of Actionability for Secondary Findings in Next-Generation Sequencing.Celine Moret, Alex Mauron, Siv Fokstuen, Periklis Makrythanasis & Samia A. Hurst - 2017 - Journal of Medical Ethics 43 (5):346-349.
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  • When Should Genome Researchers Disclose Misattributed Pahentage?Amulya Mandava, Joseph Millum & Benjamin E. Berkman - 2015 - Hastings Center Report 45 (4):28-36.
    Research studies increasingly use genomic sequencing to draw inferences based on comparisons between the genetic data of a set of purportedly related individuals. As use of this method progresses, it will become much more common to discover that the assumed biological relationships between the individuals are mistaken. Consequently, researchers will have to grapple with decisions about whether to return incidental findings of misattributed parentage on a much larger scale than ever before. In this paper we provide an extended argument for (...)
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  • Ethical considerations in forensic genetics research on tissue samples collected post-mortem in Cape Town, South Africa.Laura J. Heathfield, Sairita Maistry, Lorna J. Martin, Raj Ramesar & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):66.
    The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa. This article discusses some of the ethical challenges that were encountered in these research projects. Among these challenges was (...)
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  • Incidental Findings of Uncertain Significance: To Know or Not to Know - That is Not the Question.Bjørn Hofmann - 2016 - BMC Medical Ethics 17 (1):1-9.
    BackgroundAlthough the “right not to know” is well established in international regulations, it has been heavily debated. Ubiquitous results from extended exome and genome analysis have challenged the right not to know. American College of Medical Genetics and Genomics Recommendations urge to inform about incidental findings that pretend to be accurate and actionable. However, ample clinical cases raise the question whether these criteria are met. Many incidental findings are of uncertain significance. The eager to feedback information appears to enter the (...)
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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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  • Ethical Considerations in Forensic Genetics Research on Tissue Samples Collected Post-Mortem in Cape Town, South Africa.Laura J. Heathfield, Sairita Maistry, Lorna J. Martin, Raj Ramesar & Jantina de Vries - 2017 - BMC Medical Ethics 18 (1):1-8.
    Background The use of tissue collected at a forensic post-mortem for forensic genetics research purposes remains of ethical concern as the process involves obtaining informed consent from grieving family members. Two forensic genetics research studies using tissue collected from a forensic post-mortem were recently initiated at our institution and were the first of their kind to be conducted in Cape Town, South Africa. Main body This article discusses some of the ethical challenges that were encountered in these research projects. Among (...)
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