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  1. Incorporating Biobank Consent into a Healthcare Setting: Challenges for Patient Understanding.T. J. Kasperbauer, Karen K. Schmidt, Ariane Thomas, Susan M. Perkins & Peter H. Schwartz - 2021 - AJOB Empirical Bioethics 12 (2):113-122.
    Background Biobank participants often do not understand much of the information they are provided as part of the informed consent process, despite numerous attempts at simplifying consent forms and improving their readability. We report the first assessment of biobank enrollees’ comprehension under an "integrated consent” process, where patients were asked to enroll in a research biobank as part of their normal healthcare experience. A number of healthcare systems have implemented similar integrated consent processes for biobanking, but it is unknown how (...)
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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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