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

艾滋病毒电子健康干预研究中的伦理考量:对招募、数据维护和知情同意程序中信息风险的影响

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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.

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