Qualitative study on ethics in paediatric Systemic Inflammatory Response Syndrome (SIRS) research: perspectives of Turkish legal guardians

This qualitative study of the opinions of legal guardians of minors with Systemic Inflammatory Response Syndrome (SIRS) in Turkey identifies and analyses the ethical challenges accompanying the management of paediatric SIRS patients and the collection of genetic data as part of a large multiomics dataset for the development of an AI-based tool for diagnostics and management of SIRS. Between January and June 2024, 14 problem-centred, semi-structured exploratory interviews with legal guardians of children with SIRS were conducted in Istanbul, Turkey. The interview consisted of 19 open-ended questions. The interviews were digitally recorded, translated into English, and two independent researchers analysed the content of the information. Qualitative content and thematic analysis were performed to identify major ethical issues. The analysis identified five major topics: solidarity, autonomy, informed consent, protection of privacy, and AI-driven ethical issues. Solidarity was the most prominent topic and encompassed the aspects of motivation for participation, raising awareness, supporting communication, and loosening data protection. Parents expressed high respect for children’s autonomy. In the vein of the triadic relationship model, the necessity of children with SIRS participating in decision-making was supported by the interviewees as well as the reconfirmation of informed consent in case of future use of collected genetic data. Regarding the development of AI-tool for SIRS, five principles were identified: wide representation, confidentiality, trustworthiness, human control, and orientation. Our study contributes to the understanding of the ethical challenges accompanying the study of diagnostics using multi-omics data and derived treatment strategies of SIRS in children and adolescents. Different functions of solidarity linked it to the other major topics, thus composing a coherent picture of the ethical aspects of paediatric SIRS research. The identified principles of AI-development correspond to those in the Assessment List for Trustworthy Artificial Intelligence (ALTAI); thus, our research confirmed their real-life relevance and usefulness.