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Updated: Mar 7, 2026

Amplifying and Quantifying HIV-1 RNA in HIV Infected Individuals with Viral Loads Below the Limit of Detection by Standard Clinical Assays
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Social life of HIV data.

Anthony K J Smith1,2,3, Daniel Storer4,5,6, Alexander McClelland7

  • 1Centre for Social Research in Health, UNSW Sydney, Sydney, New South Wales, Australia anthony.smith@unsw.edu.au.

Medical Humanities
|March 5, 2026
PubMed
Summary

Understanding the social life of HIV data is crucial for public health. This review explores concepts like data colonialism and data justice to promote ethical and reflexive HIV data practices.

Keywords:
HIV/AIDSMedical humanitiesmedical ethics/bioethics

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Area of Science:

  • Public Health
  • Infectious Disease Epidemiology
  • Data Science Ethics

Background:

  • Data is fundamental to public health and managing infectious diseases like HIV.
  • Tensions exist regarding data generation, storage, analysis, and its reflection of reality.

Purpose of the Study:

  • To provide an overview of key concepts for understanding the social life of HIV public health data.
  • To advocate for critical attention to ethical and reflexive HIV data practices.

Main Methods:

  • Literature review of concepts related to the social life of data.
  • Exploration of datafication, data colonialism, data sovereignty, data justice, data capabilities, data performativity, and reflexivity.

Main Results:

  • Identified key concepts shaping the social life of HIV data.
  • Highlighted concerns regarding data governance, equity, and marginalized groups.
  • Emphasized the recursive relationship between data and social worlds.

Conclusions:

  • Critical attention to the 'social life of HIV data' is essential.
  • Promotes ethical and reflexive practices in HIV data generation and utilization.
  • Advocates for centering the processes of data meaning-making and social influence.