马来西亚使用智能手机应用程序预防艾滋病的伦理问题：与男男性行为者的焦点小组研究
Ethical Issues in the Use of Smartphone Apps for HIV Prevention in Malaysia: Focus Group Study With Men Who Have Sex With Men.
作者信息
Khati Antoine, Wickersham Jeffrey A, Rosen Aviana O, Luces Jeffrey Ralph B, Copenhaver Nicholas, Jeri-Wahrhaftig Alma, Ab Halim Mohd Akbar, Azwa Iskandar, Gautam Kamal, Ooi Kai Hong, Shrestha Roman
机构信息
Department of Allied Health Sciences, University of Connecticut, Storrs, CT, United States.
AIDS Program, Yale School of Medicine, New Haven, CT, United States.
出版信息
JMIR Form Res. 2022 Dec 23;6(12):e42939. doi: 10.2196/42939.
BACKGROUND
The use of smartphone apps can improve the HIV prevention cascade for key populations such as men who have sex with men (MSM). In Malaysia, where stigma and discrimination toward MSM are high, mobile health app-based strategies have the potential to open new frontiers for HIV prevention. However, little guidance is available to inform researchers about the ethical concerns that are unique to the development and implementation of app-based HIV prevention programs.
OBJECTIVE
This study aimed to fill this gap by characterizing the attitudes and concerns of Malaysian MSM regarding HIV prevention mobile apps, particularly regarding the ethical aspects surrounding their use.
METHODS
We conducted web-based focus group discussions with 23 MSM between August and September 2021. Using in-depth semistructured interviews, participants were asked about the risks and ethical issues they perceived to be associated with using mobile apps for HIV prevention. Each session was digitally recorded and transcribed. Transcripts were inductively coded using the Dedoose software (SocioCultural Research Consultants) and analyzed to identify and interpret emerging themes.
RESULTS
Although participants were highly willing to use app-based strategies for HIV prevention, they raised several ethical concerns related to their use. Prominent concerns raised by participants included privacy and confidentiality concerns, including fear of third-party access to personal health information (eg, friends or family and government agencies), issues around personal health data storage and management, equity and equitable access, informed consent, and regulation.
CONCLUSIONS
The study's findings highlight the role of ethical concerns related to the use of app-based HIV prevention programs. Given the ever-growing nature of such technological platforms that are intermixed with a complex ethical-legal landscape, mobile health platforms must be safe and secure to minimize unintended harm, safeguard user privacy and confidentiality, and obtain public trust and uptake.
背景
使用智能手机应用程序可以改善针对男男性行为者（MSM）等关键人群的艾滋病预防流程。在马来西亚，对男男性行为者的污名化和歧视程度很高，基于移动健康应用程序的策略有可能为艾滋病预防开辟新的途径。然而，对于基于应用程序的艾滋病预防项目开发和实施过程中特有的伦理问题，可供研究人员参考的指导很少。
目的
本研究旨在通过描述马来西亚男男性行为者对艾滋病预防移动应用程序的态度和担忧，特别是围绕其使用的伦理方面，来填补这一空白。
方法
2021年8月至9月，我们对23名男男性行为者进行了基于网络的焦点小组讨论。通过深入的半结构化访谈，询问参与者他们认为使用移动应用程序进行艾滋病预防所涉及的风险和伦理问题。每次会议都进行了数字录音和转录。使用Dedoose软件（社会文化研究顾问公司）对转录文本进行归纳编码，并进行分析以识别和解释新出现的主题。
结果
尽管参与者非常愿意使用基于应用程序的艾滋病预防策略，但他们提出了一些与使用相关的伦理问题。参与者提出的突出问题包括隐私和保密问题，包括担心第三方获取个人健康信息（如朋友、家人和政府机构）、个人健康数据存储和管理问题、公平和平等获取问题、知情同意问题以及监管问题。
结论
该研究结果凸显了与基于应用程序的艾滋病预防项目使用相关的伦理问题的作用。鉴于此类技术平台不断发展，且与复杂的伦理法律环境交织在一起，移动健康平台必须安全可靠，以尽量减少意外伤害、保护用户隐私和保密，并获得公众信任和接受。
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