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艾滋病毒电子健康干预研究中的伦理问题:对招募、数据维护和同意程序中的信息风险的影响。

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

机构信息

Center for Ethics Education and Department of Psychology, Fordham University, 117 Dealy Hall, Rose Hill Campus, 441 E. Fordham Road, Bronx, NY, 10458, USA.

Department of Psychology, Fordham University, Bronx, NY, USA.

出版信息

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

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.

摘要

目的综述:电子健康(eHealth)HIV 干预措施具有一定的优势,但也对参与者的隐私和保密性构成了挑战,这是在线策略应用中固有的问题。本文回顾了当前的指导方针和最近的出版物,以确定在招募、数据管理和知情同意方面的伦理问题和建议的解决方案。

最新发现:在 eHealth HIV 研究中,招募、数据收集和存储工作以保护信息风险,这突出了研究人员保护参与者隐私的能力与他们所使用的在线平台所带来的不断发展的信息风险之间的紧张关系。充分应对这些挑战需要更新技术能力,并对参与者进行教育,让他们了解自己保护隐私不受侵犯的责任。当干预措施涉及同伴或社区支持时,尤其是涉及未成年人时,需要额外的保护。技术的快速发展给未来干预措施的最佳实践的确定带来了挑战。本文借鉴了描述研究人员经验的已发表作品,为该领域的指导方针的不断发展做出贡献。

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