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  1. From proband to provider: is there an obligation to inform genetic relatives of actionable risks discovered through direct-to-consumer genetic testing?Jordan A. Parsons & Philip E. Baker - 2022 - Journal of Medical Ethics 48 (3):205-212.
    Direct-to-consumer genetic testing is a growing phenomenon, fuelled by the notion that knowledge equals control. One ethical question that arises concerns the proband’s duty to share information indicating genetic risks in their relatives. However, such duties are unenforceable and may result in the realisation of anticipated harm to relatives. We argue for a shift in responsibility from proband to provider, placing a duty on test providers in the event of identified actionable risks to relatives. Starting from Parker and Lucassen’s 'joint (...)
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  • How do healthcare professionals respond to ethical challenges regarding information management? A review of empirical studies.Cornelius Ewuoso, Susan Hall & Kris Dierickx - 2021 - Global Bioethics 32 (1):67-84.
    Aim This study is a systematic review that aims to assess how healthcare professionals manage ethical challenges regarding information within the clinical context.Method and Materials We carried out searches in PubMed, Google Scholar and Embase, using two search strings; searches generated 665 hits. After screening, 47 articles relevant to the study aim were selected for review. Seven articles were identified through snowballing, and 18 others were included following a system update in PubMed, bringing the total number of articles reviewed to (...)
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  • ‘Is this knowledge mine and nobody else's? I don't feel that.’ Patient views about consent, confidentiality and information-sharing in genetic medicine: Table 1.Sandi Dheensa, Angela Fenwick & Anneke Lucassen - 2016 - Journal of Medical Ethics 42 (3):174-179.
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  • Respectful care of human dignity: how is it perceived by patients and nurses?Rahime Aydın Er, Aysel İncedere & Selda Öztürk - 2018 - Journal of Medical Ethics 44 (10):675-680.
    ObjectiveDignified care protects the patient’s rights and provides appropriate ethical care while improving the quality of nursing care. In this context, the opinions of nurses and patients who receive nursing care about dignified care are important. The aim of this study was to explore the opinions and experiences of Turkish patients and nurses about respectful care of human dignity.MethodsThis descriptive cross-sectional study was conducted in Turkey. Participants were inpatients at cardiology, neurology and neurosurgery clinics and nurses working in these clinics. (...)
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  • The Concept of “Genetic Responsibility” and Its Meanings: A Systematic Review of Qualitative Medical Sociology Literature.Jon Leefmann, Manuel Schaper & Silke Schicktanz - 2017 - Frontiers in Sociology 18 (1):1-22.
    The acquisition of genetic information (GI) confronts both the affected individuals and healthcare providers with difficult, ambivalent decisions. Genetic responsibility (GR) has become a key concept in both ethical and socioempirical literature addressing how and by whom decision-making with respect to the morality of GI is approached. However, despite its prominence, the precise meaning of the concept of GR remains vague. Therefore, we conducted a systematic literature review on the usage of the concept of GR in qualitative, socioempirical studies, to (...)
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