Ethical issues in the use of smartphone apps for HIV prevention in Malaysia: focus group study with men who have sex with men

• Main Authors: 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
• Format: Article
• Published: JMIR Publications Inc. 2022
• Subjects: R Medicine (General)
• Online Access: http://eprints.um.edu.my/43995/; https://www.scopus.com/inward/record.uri?eid=2-s2.0-85145557131&doi=10.2196%2f42939&partnerID=40&md5=ed55f1b1a846dc944c9cd25ab89a62f4
• Institution: Universiti Malaya

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. ©Antoine Khati, Jeffrey A Wickersham, Aviana O Rosen, Jeffrey Ralph B Luces, Nicholas Copenhaver, Alma Jeri-Wahrhaftig, Mohd Akbar Ab Halim, Iskandar Azwa, Kamal Gautam, Kai Hong Ooi, Roman Shrestha.