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  1. Research based on existing clinical data and biospecimens: a systematic study of patients’ opinions.Arne Einar Vaaler, Linda Tømmerdal Roten & Hilde Eikemo - 2022 - BMC Medical Ethics 23 (1):1-8.
    BackgroundThe aim of the present survey was to investigate newly discharged hospital patients’ opinions on secondary use of their hospital data and biospecimens within the context of health research in general and, more specifically, on genetic research, data sharing across borders and cooperation with the health industry.MethodsA paper questionnaire was sent to 1049 consecutive newly discharged hospital patients.ResultsThe vast majority of the respondents preferred to be informed or to receive no notification at all for secondary research on their health data (...)
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  • Psychological Hesitancy Is Not an Ethical Standard.John J. Paris - 2019 - American Journal of Bioethics 19 (3):59-60.
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  • To Act or Not to Act, That Is the Question.Rosamond Rhodes - 2019 - American Journal of Bioethics 19 (3):39-41.
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  • Return of Results in Population Studies: How Do Participants Perceive Them?Hélène Nobile, Pascal Borry, Jennifer Moldenhauer & Manuela M. Bergmann - 2021 - Public Health Ethics 14 (1):12-22.
    As a cornerstone of public health, epidemiology has lately undergone substantial changes enabled by, among other factors, the use of biobank infrastructures. In biobank-related research, the return of results to participants constitutes an important and complex ethical question. In this study, we qualitatively investigated how individuals perceive the results returned following their participation in cohort studies with biobanks. In our semi-structured interviews with 31 participants of two such German studies, we observed that some participants overestimate the nature of the personal (...)
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