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- McKay, Francis, et al.
(författare)
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Inalienable data: Ethical imaginaries of de-identified health data ownership
- 2023
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Ingår i: SSM-QUALITATIVE RESEARCH IN HEALTH. - : ELSEVIER. - 2667-3215. ; 4
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Tidskriftsartikel (refereegranskat)abstract
- Many legal, ethical, and regulatory frameworks allow de-identified health data to be shared for research without patients opt-in consent. However, there may be public concerns about this practice, as people may feel they should have some say in how such data is used. This paper introduces the concept of the "inalienability of deidentified data," to describe a key assumption underlying that public concern and preference. The assumption, derived from ethnographic research with public and professional stakeholders in AI driven medical image analysis over the past two years, refers to a sense of felt ownership over de-identified health data, even where the subject has been obscured as referent and no clear legal rights of data ownership otherwise exist. The concept is important to medical ethics because it underpins public expectations regarding the rights people should have over the sharing of medical data (including expectations for consent). We note that where those expectations go counter to current legal and bioethical frameworks for de-identified data sharing, they provide a challenge for public support of big data and artificial intelligence driven health research.
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| 2. |
- Olofsson, Tobias, et al.
(författare)
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The making of a Swedish strategy : How organizational culture shaped the Public Health Agency's pandemic response
- 2022
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Ingår i: SSM Qualitative Research in Health. - : Elsevier BV. - 2667-3215. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- Several suggestions have been made as to why Sweden's approach to managing the COVID-19 pandemic came to rely on a strategy based on voluntary measures. Two of the most prominent explanations for why the country chose a different strategy than many other countries have focused on micro- and macro-level factors, explaining the strategy either in terms of the psychologies of prominent actors or by pointing to particularities in Swedish constitutional law. Supported by a qualitative analysis using interviews and text analysis, we argue that the Swedish strategy cannot be understood without paying attention to the meso-level and the organizations that produced the strategy. Moreover, we argue that to understand why one of the central organizations in Swedish pandemic management, the Public Health Agency, came to favor certain interventions, one must investigate the culture of production inside the organization and how it created precedents that led the Agency to approach pandemic management with a focus on balancing current and future health risks.
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