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  1. Khati A, Wickersham JA, Rosen AO, Luces JRB, Copenhaver N, Jeri-Wahrhaftig A, et al.
    JMIR Form Res, 2022 Dec 23;6(12):e42939.
    PMID: 36563046 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.

  2. Karbwang J, Koonrungsesomboon N, Torres CE, Jimenez EB, Kaur G, Mathur R, et al.
    BMC Med Ethics, 2018 09 15;19(1):79.
    PMID: 30219106 DOI: 10.1186/s12910-018-0318-x
    BACKGROUND: The use of lengthy, detailed, and complex informed consent forms (ICFs) is of paramount concern in biomedical research as it may not truly promote the rights and interests of research participants. The extent of information in ICFs has been the subject of debates for decades; however, no clear guidance is given. Thus, the objective of this study was to determine the perspectives of research participants about the type and extent of information they need when they are invited to participate in biomedical research.

    METHODS: This multi-center, cross-sectional, descriptive survey was conducted at 54 study sites in seven Asia-Pacific countries. A modified Likert-scale questionnaire was used to determine the importance of each element in the ICF among research participants of a biomedical study, with an anchored rating scale from 1 (not important) to 5 (very important).

    RESULTS: Of the 2484 questionnaires distributed, 2113 (85.1%) were returned. The majority of respondents considered most elements required in the ICF to be 'moderately important' to 'very important' for their decision making (mean score, ranging from 3.58 to 4.47). Major foreseeable risk, direct benefit, and common adverse effects of the intervention were considered to be of most concerned elements in the ICF (mean score = 4.47, 4.47, and 4.45, respectively).

    CONCLUSIONS: Research participants would like to be informed of the ICF elements required by ethical guidelines and regulations; however, the importance of each element varied, e.g., risk and benefit associated with research participants were considered to be more important than the general nature or technical details of research. Using a participant-oriented approach by providing more details of the participant-interested elements while avoiding unnecessarily lengthy details of other less important elements would enhance the quality of the ICF.

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