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  1. Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.Dick L. Willems, Hanno L. Tan, Marieke T. Blom, Rens Veeken & Marieke A. R. Bak - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and (...)
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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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  • Revealing the results of whole-genome sequencing and whole-exome sequencing in research and clinical investigations: some ethical issues: Table 1.Nina Hallowell, Alison Hall, Corinna Alberg & Ron Zimmern - 2015 - Journal of Medical Ethics 41 (4):317-321.
  • How Do Young People with Cystic Fibrosis Conceptualize the Distinction Between Research and Treatment? A Qualitative Interview Study.Jennifer A. Dobson, Emily Christofides, Melinda Solomon, Valerie Waters & Kieran O’Doherty - 2015 - AJOB Empirical Bioethics 6 (4):1-11.
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  • Towards a national genomics medicine service: the challenges facing clinical-research hybrid practices and the case of the 100 000 genomes project. [REVIEW]Sandi Dheensa, Gabrielle Samuel, Anneke M. Lucassen & Bobbie Farsides - 2018 - Journal of Medical Ethics 44 (6):397-403.
    Clinical practice and research are governed by distinct rules and regulations and have different approaches to, for example, consent and providing results. However, genomics is an example of where research and clinical practice have become codependent. The 100 000 genomes project is a hybrid venture where a person can obtain a clinical investigation only if he or she agrees to also participate in ongoing research—including research by industry and commercial companies. In this paper, which draws on 20 interviews with professional (...)
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