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Ethical Imperatives for Working With Diverse Populations in Digital Research

Jonathan Herington, Kay Connelly, Judy Illes

2023Journal of Medical Internet Research14 citationsDOIOpen Access PDF

Abstract

Digital research methodologies are driving a revolution in health technology but do not yet fully engage diverse and historically underrepresented populations. In this paper, we explore the ethical imperative for such engagement alongside accompanying challenges related to recruitment, appreciation of risk, and confidentiality, among others. We critically analyze existing research ethics frameworks and find that their reliance on individualistic and autonomy-focused models of research ethics does not offer adequate protection in the context of the diversity imperative. To meet the requirements of justice and inclusivity in digital research, methods will benefit from a reorientation toward more participatory practices.

Topics & Concepts

ConfidentialityAutonomyEngineering ethicsResearch ethicsContext (archaeology)Economic JusticeIndividualismParticipatory action researchDiversity (politics)SociologyInformed consentPublic relationsPolitical scienceMedicineEngineeringLawAlternative medicinePathologyBiologyAnthropologyPaleontologyEthics in Clinical ResearchEthics and Social Impacts of AIArtificial Intelligence in Healthcare and Education
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