Ethical Considerations in HIV eHealth Intervention Research: Implications for Informational Risk in Recruitment, Data Maintenance, and Consent Procedures

Curr HIV/AIDS Rep. 2020 Jun;17(3):180-189. doi: 10.1007/s11904-020-00489-z.


Purpose of review: Along with the benefits of eHealth HIV interventions are challenges to participant privacy and confidentiality inherent in the use of online strategies. This paper reviews current guidelines and recent publications to identify ethical issues and suggested solutions in recruitment, data management, and informed consent.

Recent findings: Across eHealth HIV research, recruitment, data collection, and storage efforts to protect informational risk highlight the tension between the investigators' ability to protect participant confidentiality and the evolving informational risk posed by the online platforms on which they are operating. Adequately addressing these challenges requires updating technical competencies and educating participants on their own responsibilities to guard against privacy violations. Additional protections are required when interventions involve peer or community support, especially with minors. The rapid progression of technology presents challenges in solidifying best practices for future interventions. This article draws on published works describing investigator experiences to contribute to the ongoing development of guidance in this area.

Keywords: Data privacy; HIV; Informed consent; Mobile research; Online recruitment; Research ethics; eHealth.

Publication types

  • Research Support, N.I.H., Extramural
  • Review

MeSH terms

  • Confidentiality / ethics*
  • HIV Infections / prevention & control*
  • Humans
  • Informed Consent / ethics*
  • Patient Selection
  • Privacy*
  • Telemedicine / ethics