Academic Bibliography

 Search 200 years of publications by Ghent University researchers.
Advanced search
1 file | 544.57 KB
Add to list
  1. Search results
  2. Data solidarity disrupted : musings o...

Data solidarity disrupted : musings on the overlooked role of mutual aid in data-driven medicine

Michiel De Proost (UGent)
(2023) KENNEDY INSTITUTE OF ETHICS JOURNAL. 33(4). p.401-419
Author
Organization
Project
Abstract
Several suggestions have been made to embolden and reorient the concept of solidarity given the emergence of data-driven medicine. Recently, the European Union introduced a new consent model for so-called data altruism to motivate people to make their data available for purposes such as scientific research or improving public services. Others have introduced the alternative concept of data solidarily, which assumes that people's interests in data sharing result from a collective commitment to assist others. What those perspectives have in common is a focus on top-down organizational structures to deal with data-driven medicine. In this article, I offer an alternative reading of data solidarity, drawing on anarchist theory that highlights the disposition of mutual aid as a broader characteristic of solidarity. I begin by briefly indicating how the existing approaches to data solidarity in healthcare remain legalistic and state-centered without thoroughly considering socially critical notions of solidarity that highlight the impact of structural injustices. I then sketch out how an anarchist understanding of mutual aid could inform the conceptualization of solidarity. Finally, I focus on two implications for the practice of data-driven medicine: (1) current proposals of data altruism seem to engender a form of reversed charity; and (2) data solidarity practices could arise from the bottom-up through spontaneous order and direct action.
Keywords
healthcare, data solidarity, mutual aid, justice, anarchism, direct action, HEALTH DATA

Downloads

  • Download
    (...).pdf
    • full text (Published version)
    • |
    • UGent only
    • |
    • PDF
    • |
    • 544.57 KB

Citation

Please use this url to cite or link to this publication:

MLA
De Proost, Michiel. “Data Solidarity Disrupted : Musings on the Overlooked Role of Mutual Aid in Data-Driven Medicine.” KENNEDY INSTITUTE OF ETHICS JOURNAL, vol. 33, no. 4, 2023, pp. 401–19, doi:10.1353/ken.2023.a931052.
APA
De Proost, M. (2023). Data solidarity disrupted : musings on the overlooked role of mutual aid in data-driven medicine. KENNEDY INSTITUTE OF ETHICS JOURNAL, 33(4), 401–419. https://doi.org/10.1353/ken.2023.a931052
Chicago author-date
De Proost, Michiel. 2023. “Data Solidarity Disrupted : Musings on the Overlooked Role of Mutual Aid in Data-Driven Medicine.” KENNEDY INSTITUTE OF ETHICS JOURNAL 33 (4): 401–19. https://doi.org/10.1353/ken.2023.a931052.
Chicago author-date (all authors)
De Proost, Michiel. 2023. “Data Solidarity Disrupted : Musings on the Overlooked Role of Mutual Aid in Data-Driven Medicine.” KENNEDY INSTITUTE OF ETHICS JOURNAL 33 (4): 401–419. doi:10.1353/ken.2023.a931052.
Vancouver
1.
De Proost M. Data solidarity disrupted : musings on the overlooked role of mutual aid in data-driven medicine. KENNEDY INSTITUTE OF ETHICS JOURNAL. 2023;33(4):401–19.
IEEE
[1]
M. De Proost, “Data solidarity disrupted : musings on the overlooked role of mutual aid in data-driven medicine,” KENNEDY INSTITUTE OF ETHICS JOURNAL, vol. 33, no. 4, pp. 401–419, 2023.
@article{01JDM2T6VJA4A7BVNVG9WRWAB9,
  abstract     = {{Several suggestions have been made to embolden and reorient the concept of solidarity given the emergence of data-driven medicine. Recently, the European Union introduced a new consent model for so-called data altruism to motivate people to make their data available for purposes such as scientific research or improving public services. Others have introduced the alternative concept of data solidarily, which assumes that people's interests in data sharing result from a collective commitment to assist others. What those perspectives have in common is a focus on top-down organizational structures to deal with data-driven medicine. In this article, I offer an alternative reading of data solidarity, drawing on anarchist theory that highlights the disposition of mutual aid as a broader characteristic of solidarity. I begin by briefly indicating how the existing approaches to data solidarity in healthcare remain legalistic and state-centered without thoroughly considering socially critical notions of solidarity that highlight the impact of structural injustices. I then sketch out how an anarchist understanding of mutual aid could inform the conceptualization of solidarity. Finally, I focus on two implications for the practice of data-driven medicine: (1) current proposals of data altruism seem to engender a form of reversed charity; and (2) data solidarity practices could arise from the bottom-up through spontaneous order and direct action.}},
  author       = {{De Proost, Michiel}},
  issn         = {{1054-6863}},
  journal      = {{KENNEDY INSTITUTE OF ETHICS JOURNAL}},
  keywords     = {{healthcare,data solidarity,mutual aid,justice,anarchism,direct action,HEALTH DATA}},
  language     = {{eng}},
  number       = {{4}},
  pages        = {{401--419}},
  title        = {{Data solidarity disrupted : musings on the overlooked role of mutual aid in data-driven medicine}},
  url          = {{http://doi.org/10.1353/ken.2023.a931052}},
  volume       = {{33}},
  year         = {{2023}},
}
Altmetric
View in Altmetric
Web of Science
Times cited: