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  1. Rights and duties of genetic counsellors in Germany related to relatives at risk: comparative thoughts on the German Genetic Diagnostics Act.Susanne A. Schneider & Uwe H. Schneider - forthcoming - Journal of Medical Ethics.
    Genetic testing has familial implications. Counsellors find themselves in (moral) conflict between medical confidentiality (towards the patient) and a potential right or even duty to warn at-risk relatives. Legal regulations vary between countries. English literature about German law is scarce. We reviewed the literature of relevant legal cases, focussing on German law, according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. This article aims to familiarise counsellors with their responsibilities, compare the situation between countries and point out (...)
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  • 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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  • The Genetic Family as Patient?Bartha Maria Knoppers & Kristina Kekesi-Lafrance - 2020 - American Journal of Bioethics 20 (6):77-80.
    Volume 20, Issue 6, June 2020, Page 77-80.
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  • Healthcare professionals’ responsibility for informing relatives at risk of hereditary disease.Kalle Grill & Anna Rosén - 2021 - Journal of Medical Ethics 47 (12):e12-e12.
    Advances in genetic diagnostics lead to more patients being diagnosed with hereditary conditions. These findings are often relevant to patients’ relatives. For example, the success of targeted cancer prevention is dependent on effective disclosure to relatives at risk. Without clear information, individuals cannot take advantage of predictive testing and preventive measures. Against this background, we argue that healthcare professionals have a duty to make actionable genetic information available to their patients’ at-risk relatives. We do not try to settle the difficult (...)
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  • Disclosure to genetic relatives without consent – Australian genetic professionals’ awareness of the health privacy law.Jane Fleming, Ainsley J. Newson, Kate Dunlop, Kristine Barlow-Stewart & Natalia Meggiolaro - 2020 - BMC Medical Ethics 21 (1):1-10.
    Background: When a genetic mutation is identified in a family member, internationally, it is usually the proband’s or another responsible family member’s role to disclose the information to at-risk relatives. However, both active and passive non-disclosure in families occurs: choosing not to communicate the information or failing to communicate the information despite intention to do so, respectively. The ethical obligations to prevent harm to at-risk relatives and promote the duty of care by genetic health professionals is in conflict with Privacy (...)
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  • A genetic researcher’s devil’s dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?Imke Christiaans, M. Corrette Ploem, Els L. M. Maeckelberghe & Lieke M. van den Heuvel - 2021 - BMC Medical Ethics 22 (1):1-7.
    BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...)
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