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  1. In search of ‘extra data’: Making tissues flow from personal to personalised medicine.Mette N. Svendsen & Clémence Pinel - 2021 - Big Data and Society 8 (2).
    One of the key features of the contemporary data economy is the widespread circulation of data and its interoperability. Critical data scholars have analysed data repurposing practices and other factors facilitating the travelling of data. While this approach focused on flows provides great potential, in this article we argue that it tends to overlook questions of attachment and belonging. Drawing upon ethnographic fieldwork within a Danish data-linkage infrastructure, and building upon insights from archival science, we discuss the work of data (...)
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  • Ethical considerations for research involving pregnant women living with HIV and their young children: a systematic review of the empiric literature and discussion.Megan S. McHenry, Mary A. Ott, Elizabeth C. Whipple, Katherine R. MacDonald, Leslie A. Enane & Catherine G. Raciti - 2021 - BMC Medical Ethics 22 (1):1-18.
    BackgroundThe proper and ethical inclusion of PWLHIV and their young children in research is paramount to ensure valid evidence is generated to optimize treatment and care. Little empirical data exists to inform ethical considerations deemed most critical to these populations. Our study aimed to systematically review the empiric literature regarding ethical considerations for research participation of PWLHIV and their young children.MethodsWe conducted this systematic review in partnership with a medical librarian. A search strategy was designed and performed within the following (...)
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