Celia B Fisher1, Elise Bragard2, Rachel Bloom2. 1. Center for Ethics Education and Department of Psychology, Fordham University, 117 Dealy Hall, Rose Hill Campus, 441 E. Fordham Road, Bronx, NY, 10458, USA. fisher@fordham.edu. 2. Department of Psychology, Fordham University, Bronx, NY, USA.
Abstract
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.
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.
Entities:
Keywords:
Data privacy; HIV; Informed consent; Mobile research; Online recruitment; Research ethics; eHealth
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