Abstract
The use of Big Data and algorithmic decision-making in healthcare has been promoted over the last decade with the claim that using such methods translates into gains for marginalized populations long mis- and under-represented in biomedical research. However, a large body of works has emerged showing that these approaches disproportionately disadvantage marginalized populations as poor design and poor data can embed existing structural inequities into newly created sociotechnical systems. Within the biomedical context, these disparities risk widening existing health disparities, including disproportionate burden of acute or chronic diseases and adverse health outcomes, experienced by underprivileged populations. This chapter demonstrates how group data rights can help alleviate these potential harms by drawing on two examples of group data rights already in use by marginalized populations. By closely analyzing the potential offered by data governance approaches used for Indigenous Data Sovereignty and by Rare Disease Advocacy Organizations, this chapter shows how group data rights can both promote health equity and ultimately proposes a framework for practically implementing group data rights in a healthcare setting.
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Wachtel, G. (2022). Towards Equitable Health Outcomes Using Group Data Rights. In: Mökander, J., Ziosi, M. (eds) The 2021 Yearbook of the Digital Ethics Lab. Digital Ethics Lab Yearbook. Springer, Cham. https://doi.org/10.1007/978-3-031-09846-8_15
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