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  1. Caregiver Perspectives on Informed Consent for a Pediatric Learning Healthcare System Model of Care.A. E. Pritchard, T. A. Zabel, L. A. Jacobson, E. Jones, C. Holingue & L. G. Kalb - 2021 - AJOB Empirical Bioethics 12 (2):92-100.
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  • Research, Digital Health Information and Promises of Privacy: Revisiting the Issue of Consent.Timothy Caulfield, Blake Murdoch & Ubaka Ogbogu - 2020 - Canadian Journal of Bioethics / Revue canadienne de bioéthique 3 (1):164-171.
    The obligation to maintain the privacy of patients and research participants is foundational to biomedical research. But there is growing concern about the challenges of keeping participant information private and confidential. A number of recent studies have highlighted how emerging computational strategies can be used to identify or reidentify individuals in health data repositories managed by public or private institutions. Some commentators have suggested the entire concept of privacy and anonymity is “dead”, and this raises legal and ethical questions about (...)
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  • Comparing Attitudes About Genomic Privacy and Data Sharing in Adolescents and Parents of Children Enrolled in a Genomic Research Repository.Courtney Berrios, Shelby Neal, Tricia Zion & Tomi Pastinen - 2024 - AJOB Empirical Bioethics 15 (1):33-40.
    Background Sharing of genomic data aims to make efficient use of limited resources, which may be particularly valuable in rare disease research. Adult research participants and parents of pediatric research participants have shown support for data sharing with protections, but little is known about adolescent attitudes on genomic privacy and data sharing.Methods In-depth interviews were conducted with 10 adolescents and 18 parents of children enrolled in a pediatric genomic research repository. Interview transcripts were analyzed for themes on attitudes toward genomic (...)
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