Advancing a Data Justice Framework for Public Health Surveillance

Area of Science:

• Public Health
• Bioethics
• Data Science

Background:

• Bioethical discussions on big data and public health surveillance often overlook surveilled populations.
• The data justice framework highlights potential harms of big data to marginalized groups.
• This study examines ethical issues in big data public health surveillance using HIV surveillance in jails as a case example.

Purpose of the Study:

• To analyze ethical issues in deploying big data for public health surveillance.
• To understand the perspectives of individuals with HIV who have been incarcerated on HIV surveillance.
• To explore how big data techniques can enhance care for incarcerated people with HIV.

Main Methods:

• Qualitative, semi-structured interviews were conducted.
• 24 participants with HIV, formerly incarcerated in county jails, were interviewed.
• The study focused on their experiences and views regarding HIV surveillance.

Main Results:

• Most participants supported state tracking of HIV testing and viral load data.
• Some participants perceived HIV surveillance as a privacy violation and avoided public health outreach.
• Reservations about surveillance increased when participants viewed state motives as self-serving, indicating mistrust.

Conclusions:

• Building trust through interpersonal interactions with public health personnel is crucial for vulnerable groups.
• Stakeholder involvement in data infrastructure design and governance advances data justice and mitigates privacy concerns.
• Future efforts should focus on incorporating voices of vulnerable populations into big data initiative design and governance.