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  1. Parental perspectives on consent for participation in large-scale, non-biological data repositories.Kiran Pohar Manhas, Stacey Page, Shawn X. Dodd, Nicole Letourneau, Aleta Ambrose, Xinjie Cui & Suzanne C. Tough - 2016 - Life Sciences, Society and Policy 12 (1):1-13.
    Background Data sharing presents several challenges to the informed consent process. Unique challenges emerge when sharing pediatric or pregnancy-related data. Here, parent preferences for sharing non-biological data are examined. Methods Groups and individual interviews were conducted with participants from two provincial, longitudinal pregnancy cohorts. Qualitative content analysis was applied to transcripts of semi-structured interviews. Results Participants were supportive of a broad, one-time consent model or a tiered consent model. These preferences were grounded in the perceived obligations for reciprocity and accuracy. (...)
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  • Improving dissemination of study results: perspectives of individuals with cystic fibrosis.Emily Christofides, Karla Stroud, Diana Elizabeth Tullis & Kieran C. O’Doherty - 2019 - Research Ethics 15 (3-4):1-14.
    The practice of communicating research findings to participants has been identified as important in the research ethics literature, but little research has examined empirically how this occurs and...
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