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Ethical and Equitable Digital Health Research: Ensuring Self-Determination in Data Governance for Racialized Communities

Published online by Cambridge University Press:  03 April 2024

Mozharul Islam ,
Arafaat A. Valiani ,
Ranjan Datta ,
Mohammad Chowdhury  and
Tanvir C. Turin Open the ORCID record for Tanvir C. Turin [Opens in a new window]
Mozharul Islam
Affiliation:
Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada Department of Sociology, Istanbul Sabahattin Zaim University, İstanbul, Türkiye
Arafaat A. Valiani
Affiliation:
Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada Department of History, Department of Indigenous, Race and Ethnic Studies, Global Health Program, University of Oregon, Eugene, OR, USA
Ranjan Datta
Affiliation:
Canada Research Chair in Community Disaster Research at the Indigenous Studies, Department of Humanities, Mount Royal University, Calgary, Canada
Mohammad Chowdhury
Affiliation:
Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
Tanvir C. Turin*
Affiliation:
Department of Family Medicine, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada
*
Corresponding author: Tanvir C. Turin; Email: turin.chowdhury@ucalgary.ca
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Abstract

Recent studies highlight the need for ethical and equitable digital health research that protects the rights and interests of racialized communities. We argue for practices in digital health that promote data self-determination for these communities, especially in data collection and management. We suggest that researchers partner with racialized communities to curate data that reflects their wellness understandings and health priorities, and respects their consent over data use for policy and other outcomes. These data governance approach honors and builds on Indigenous Data Sovereignty (IDS) decolonial scholarship by Indigenous and non-indigenous researchers and its adaptations to health research involving racialized communities from former European colonies in the global South. We discuss strategies to practice equity, diversity, inclusion, accessibility and decolonization (EDIAD) principles in digital health. We draw upon and adapt the concept of Precision Health Equity (PHE) to emphasize models of data sharing that are co-defined by racialized communities and researchers, and stress their shared governance and stewardship of data that is generated from digital health research. This paper contributes to an emerging research on equity issues in digital health and reducing health, institutional, and technological disparities. It also promotes the self-determination of racialized peoples through ethical data management.

Keywords

data governancedecolonizationdigital healthdigital technologyhealth equityprecision health equityraceself-determination
Type
Commentary
Information
Cambridge Quarterly of Healthcare Ethics , First View , pp. 1 - 11
Copyright
© The Author(s), 2024. Published by Cambridge University Press

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Footnotes

Mozharul Islam and Arafaat A. Valiani contributed equally.

References

Notes

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