The therapeutic misconception—the tendency for research participants to conflate research procedures with clinical care and to expect direct therapeutic benefit from participation—has been extensively documented in clinical trials. However, less is known about how this phenomenon manifests in public health research, where interventions are designed to benefit populations rather than individuals. This qualitative study explored how community members in rural Uganda conceptualize the benefits of public health research participation and the extent to which expectations of direct benefit shape their willingness to consent. Data were collected through 12 focus group discussions (FGDs) comprising of 7 participants each and 15 in-depth interviews (IDIs) involving 89 participants, including community members, local leaders, religious leaders, Village Health Team (VHT) members, and a woman leader . 10 of the 15 key informants also participated in FGDs. Participants were recruited from urban and rural sub-counties in Bushenyi District, Southwestern Uganda. Thematic analysis identified four major themes. First, conflation of research with clinical care: participants described research participation as a pathway to accessing medical treatment they could not otherwise afford. Second, expectations of tangible community development: participants expected research to deliver visible infrastructure such as boreholes, clinics, or roads. Third, educational value as a legitimate benefit: participants valued research that taught them about disease prevention and health practices. Fourth, frustration and mistrust from unmet expectations: participants expressed anger and disappointment when anticipated benefits failed to materialize, leading to reluctance to participate in future studies. Community members in rural Uganda commonly hold expectations of direct personal or community benefit from public health research participation. Expectations of direct treatment reflect a form of therapeutic misconception adapted to the public health context, whereas expectations of feedback, education, reciprocity, and appropriate benefit sharing represent legitimate ethical expectations. Researchers must distinguish research from clinical care transparently, manage benefit expectations realistically, and commit to providing non-therapeutic benefits such as health education and feedback as ethical obligations.
The rapid evolution of networked environments has intensified ethical challenges in media research, highlighting the need to move beyond procedural compliance toward more reflexive practices. This study examines the lived experiences and ethical dilemmas encountered by new media researchers through a comparative qualitative approach focusing on T & uuml;rkiye as a distinctive legal and socio-cultural context. Semi-structured interviews were conducted with twelve researchers (six from T & uuml;rkiye and six from global regions including the US, Ireland, Spain, Pakistan, Brazil, and Nigeria). Findings indicate differences in how researchers perceive ethics: while global participants emphasize researcher identity and reflexivity, Turkish participants focus more on data security and academic integrity. Across contexts, participants describe Institutional Review Board (IRB) processes as largely procedural and lacking field-specific expertise. The study suggests that current challenges in digital research ethics cannot be addressed solely through legal frameworks and highlights the need for more context-sensitive and educational approaches within ethics governance.
Participant recruitment and retention remain significant research challenges with implications for scientific validity, fair participant selection, and social value. While recruitment strategies are well-studied, participant feedback, a form of community engagement encouraged in research ethics guidance (e.g., ), is less often used to improve participant experiences and retention. This pilot study surveyed 25 former participants (20 completers, 5 non-completers) from four prior trials at a human health research center towards developing an online participant feedback survey to use across the entire center. Phone interviews were analyzed using Interpretative Phenomenological Analysis (IPA). Respondents reported mostly positive experiences with the mobile lab and staff. Participation motivations included altruism, curiosity, compensation, and therapeutic potential. Non-completers cited inconvenience. Findings demonstrate the value of participant feedback and informed the development of an online, center-wide feedback tool.
The National Institutes of Health Fogarty International Center has supported international bioethics training program funding for over two decades. This program aims to equip trainees with the knowledge and skills to serve as research ethics professionals and bioethics scholars in low- and middle-income countries (LMICs) and support the ethical conduct of socially valuable research in these countries. In this paper, we update a review of the program's first decade (2000-2012) and describe trends in its second decade (2013-2023), including the successful launch of PhD and post-doctoral training and increasing leadership by principal investigators from LMICs. Despite important progress, more research ethics professionals and bioethics scholars are needed to build and sustain strong bioethics infrastructure in LMICs.
