Switch to: References

Add citations

You must login to add citations.
  1. 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 (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark  
  • What does engagement mean to participants in longitudinal cohort studies? A qualitative study.Madeleine J. Murtagh, Mwenza Blell, Andrew Turner, Joel T. Minion & Cynthia A. Ochieng - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundEngagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an (...)
    No categories
    Direct download (2 more)  
     
    Export citation  
     
    Bookmark  
  • From “Informed” to “Engaged” Consent: Risks and Obligations in Consent for Participation in a Health Data Repository.Elizabeth Bromley, Alexandra Mendoza-Graf, Sandra Berry, Camille Nebeker & Dmitry Khodyakov - 2020 - Journal of Law, Medicine and Ethics 48 (1):172-182.
    The development and use of large and dynamic health data repositories designed to support research pose challenges to traditional informed consent models. We used semi-structured interviewing to elicit diverse research stakeholders' views of a model of consent appropriate to participation in initiatives that entail collection, long-term storage, and undetermined future research use of multiple types of health data. We demonstrate that, when considering health data repositories, research stakeholders replace a concept of consent as informed with one in which consent is (...)
    Direct download (3 more)  
     
    Export citation  
     
    Bookmark   5 citations