Ethical Issues in the Use of Smartphone Apps for HIV Prevention in Malaysia: Focus Group Study With Men Who Have Sex With Men

Abstract

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.

Evaluation of Chinese HIV Mobile Apps by Researchers and Patients With HIV: Quality Evaluation Study

“…As social stigmatization and discrimination are still associated with AIDS, many users are concerned about their personal information being disclosed or misused, posing a threat to their privacy and security [39]. Therefore, unlike general mobile apps, ensuring user privacy protection in AIDS mobile apps is of utmost importance, aligning with previous research findings [40]. However, in this study, of the 21 apps, only 5 (24%) mobile apps, including 2 (10%) WeChat applets (Chabei and Su Zhou Red Ribbon) and 3 (14%) apps (My Life+, Hong Feng Wan, and Xiao Ai), provided privacy policies or agreements.…”

“…However, most of these apps lack privacy protection features. Unlike general mobile apps, privacy protection is especially crucial in AIDS-related mobile apps because it directly affects users' willingness to use them [40]. Therefore, the introduction of legal and ethical frameworks for privacy protection as well as privacy protection technologies is essential.…”

Ethical considerations for research with sexual and gender minorities

“…Guidance and ethical considerations for undertaking transgender health research and institutional review boards adjudicating this research Adams et al (32) 2017 Creación de criterios para que las Juntas de Revisión Institucional (IRB) para evaluar la orientación ética de las propuestas de investigación sobre la salud transgénero Ethical issues in using social media to deliver an HIV prevention intervention: results from the hope Peru study Garett et al (33) 2017 Ética de la investigación de las redes sociales de acuerdo con los Principios de Belmont Ethical issues to consider in the design of HIV prevention trials involving transgender people…”

“…(27) En la actualidad la investigación moderna depende en gran medida de las nuevas tecnologías, entre ellas el internet junto a los dispositivos móviles. (28,29,30,31,32) Por ejemplo, las redes sociales se han convertido cada vez como una herramienta valiosa para realizar investigación en minorías sexuales, estas permiten la interacción en tiempo real con los potenciales participantes. (28) Un estudio que analizó los datos generados a través de una aplicación que facilita el sexo en público entre los hombres evidenció que este conjunto de datos podría entregar un valor a la investigación ya que permite aprender, a escala, sobre temas de discusión, actividades, demografía y gustos asociados con las diferentes ubicaciones en donde se produce el acto sexual.…”

“…(34) Por ejemplo, realizar investigaciones que utilicen aplicaciones para dispositivos móviles podrían tener gran valor ya que podrían reducir contagio de VIH, esto no ha ocurrido porque aún existen países donde la homosexualidad es ilegal y, el estigma y discriminación en torno al VIH hace que los servicios tradicionales de prevención basados en lugares establecidos sean menos adecuados para poblaciones vulnerables. (32)…”