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  1.  27
    Moving from ‘fully’ to ‘appropriately’ informed consent in genomics: The PROMICE framework.Julian J. Koplin, Christopher Gyngell, Julian Savulescu & Danya F. Vears - 2022 - Bioethics 36 (6):655-665.
    Genomic sequencing technologies (GS) pose novel challenges not seen in older genetic technologies, making traditional standards for fully informed consent difficult or impossible to meet. This is due to factors including the complexity of the test and the broad range of results it may identify. Meaningful informed consent is even more challenging to secure in contexts involving significant time constraints and emotional distress, such as when rapid genomic testing (RGS) is performed in neonatal intensive care units. In this article, we (...)
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  2.  85
    Ethical sharing of health data in online platforms- which values should be considered?Brígida Riso, Aaro Tupasela, Danya F. Vears, Heike Felzmann, Julian Cockbain, Michele Loi, Nana C. H. Kongsholm, Silvia Zullo & Vojin Rakic - 2017 - Life Sciences, Society and Policy 13 (1):1-27.
    Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes. With this in mind, the Science and Values Working Group of the COST Action CHIP ME ‘Citizen's Health through (...)
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  3.  29
    The Parliamentary Inquiry into Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 in Australia: A Qualitative Analysis.Jemima W. Allen, Christopher Gyngell, Julian J. Koplin & Danya F. Vears - 2024 - Journal of Bioethical Inquiry 21 (1):67-80.
    Recently, Australia became the second jurisdiction worldwide to legalize the use of mitochondrial donation technology. The Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 allows individuals with a family history of mitochondrial disease to access assisted reproductive techniques that prevent the inheritance of mitochondrial disease. Using inductive content analysis, we assessed submissions sent to the Senate Committee as part of a programme of scientific inquiry and public consultation that informed drafting of the Bill. These submissions discussed a range of bioethical (...)
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  4.  22
    On the Epistemic Status of Prenatal Ultrasound: Are Ultrasound Scans Photographic Pictures?Maddalena Favaretto, Danya F. Vears & Pascal Borry - 2020 - Journal of Medicine and Philosophy 45 (2):231-250.
    Medical imaging is predominantly a visual field. In this context, prenatal ultrasound images assume intense social, ethical, and psychological significance by virtue of the subject they represent: the fetus. This feature, along with the sophistication introduced by three-dimensional ultrasound imaging that allows improved visualization of the fetus, has contributed to the common impression that prenatal ultrasound scans are like photographs of the fetus. In this article we discuss the consistency of such a comparison. First, we investigate the epistemic role of (...)
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  5.  35
    Participation of Children in Medical Decision-Making: Challenges and Potential Solutions.Vida Jeremic, Karine Sénécal, Pascal Borry, Davit Chokoshvili & Danya F. Vears - 2016 - Journal of Bioethical Inquiry 13 (4):525-534.
    Participation in healthcare decision-making is considered to be an important right of minors, and is highlighted in both international legislation and public policies. However, despite the legal recognition of children’s rights to participation, and also the benefits that children experience by their involvement, there is evidence that legislation is not always translated into healthcare practice. There are a number of factors that may impact on the ability of the child to be involved in decisions regarding their medical care. Some of (...)
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  6.  27
    Why genomics researchers are sometimes morally required to hunt for secondary findings.Julian J. Koplin, Julian Savulescu & Danya F. Vears - 2020 - BMC Medical Ethics 21 (1):1-11.
    Genomic research can reveal ‘unsolicited’ or ‘incidental’ findings that are of potential health or reproductive significance to participants. It is widely thought that researchers have a moral obligation, grounded in the duty of easy rescue, to return certain kinds of unsolicited findings to research participants. It is less widely thought that researchers have a moral obligation to actively look for health-related findings. This paper examines whether there is a moral obligation, grounded in the duty of easy rescue, to actively hunt (...)
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  7. A practical checklist for return of results from genomic research in the European context.Danya F. Vears, Signe Mežinska, Nina Hallowell, Heidi Beate Hallowell, Bridget Ellul, Therese Haugdahl Nøst, , Berge Solberg, Angeliki Kerasidou, Shona M. Kerr, Michaela Th Mayrhofer, Elizabeth Ormondroyd, Birgitte Wirum Sand & Isabelle Budin-Ljøsne - 2023 - European Journal of Human Genetics 1:1-9.
    An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject’s right under the General Data Protection Regulation (GDPR), and many legal and ethical guidelines allow or require participants to receive personal data generated in research, the practice of returning results is not straightforward and raises several practical and ethical issues. Existing guidelines focusing on return of IRR are mostly project-specific, only discuss which results to (...)
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  8.  45
    Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits.Arianna Manzini & Danya F. Vears - 2018 - Journal of Bioethical Inquiry 15 (1):111-120.
    Predictive genetic testing for susceptibility to psychiatric conditions is likely to become part of standard practice. Because the onset of most psychiatric diseases is in late adolescence or early adulthood, testing minors could lead to early identification that may prevent or delay the development of these disorders. However, due to their complex aetiology, psychiatric genetic testing does not provide the immediate medical benefits that current guidelines require for testing minors. While several authors have argued non-medical benefits may play a crucial (...)
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  9.  10
    Doctor–Parent Disagreement for Preterm Infants Born in the Grey Zone: Do Ethical Frameworks Help?Alice Cavolo, Danya F. Vears, Gunnar Naulaers, Bernadette Dierckx de Casterlé, Lynn Gillam & Chris Gastmans - forthcoming - Journal of Bioethical Inquiry:1-12.
    Objective: To examine i) how ethical frameworks can be used in concrete cases of parent–doctors’ disagreements for extremely preterm infants born in the grey zone to guide such difficult decision-making; and ii) what challenges stakeholders may encounter in using these frameworks. Design: We did a case analysis of a concrete case of parent–doctor disagreement in the grey zone using two ethical frameworks: the best interest standard and the zone of parental discretion. Results: Both ethical frameworks entailed similar advantages and challenges. (...)
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  10.  27
    The social shaping of a diagnosis in Next Generation Sequencing.Janneke M. L. Kuiper, Pascal Borry, Danya F. Vears & Ine Van Hoyweghen - 2021 - New Genetics and Society 40 (4):425-448.
    Although Next Generation Sequencing (NGS) has increased our ability to test and diagnose, its results are often not clear-cut and require a complex interpretation and negotiation process by both healthcare professionals and patients involved. In this paper, we explore how diagnoses identified through NGS are socially shaped under influence of the broader social context. Using an analytical framework stemming from the sociology of health and illness and science and technology studies, with a focus on the construction of diagnosis and the (...)
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  11.  18
    Offering and Returning Secondary Findings in the Context of Exome Sequencing for Hearing Loss: Clinicians’ Views and Experiences.Lauren Notini, Clara Gaff, Julian Savulescu & Danya F. Vears - 2023 - AJOB Empirical Bioethics 14 (2):74-83.
    Background There is ongoing debate regarding whether and under which circumstances secondary findings (SF) should be offered in the pediatric context. Although studies have examined patient perspectives on receiving SF, little research has been conducted examining the experiences of clinicians offering SF to parents of newborns receiving genomic sequencing for a recently diagnosed medical condition.Methods To address this, we conducted qualitative interviews exploring the views and experiences of 12 clinicians who offered SF to parents of infants who had diagnostic exome (...)
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  12.  28
    Pre- and post-testing counseling considerations for the provision of expanded carrier screening: exploration of European geneticists’ views.Sandra Janssens, Davit Chokoshvili, Danya F. Vears, Anne De Paepe & Pascal Borry - 2017 - BMC Medical Ethics 18 (1):46.
    BackgroundCarrier screening is generally performed with the aim of identifying healthy couples at risk of having a child affected with a monogenic disorder to provide them with reproductive options. Expanded carrier screening, which provides the opportunity for multiple conditions to be screened in one test, offers a more cost-effective and comprehensive option than screening for single disorders. However, implementation of ECS at a population level would have implications for genetic counseling practice.MethodsWe conducted semi-structured interviews with sixteen European clinical and molecular (...)
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  13.  14
    Correction to: Predictive Psychiatric Genetic Testing in Minors: An Exploration of the Non-Medical Benefits.Arianna Manzini & Danya F. Vears - 2018 - Journal of Bioethical Inquiry 15 (1):121-121.
    The article [Title], written by [AuthorNames], was originally published electronically on the publisher’s internet portal on [date of OnlineFirst publication] without open access.
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