Issues of social justice in the development of personalised therapy for paediatric SIRS patients

Abstract Background Systemic Inflammatory Response Syndrome (SIRS) is an often-emergent condition, which lacks specific diagnostic tools. Personalised therapy could fill this gap but as every new technology, it raises issues of social justice. Our report aims at identification and analysis of social justice implications within the bigger ERA PerMed funded project of development of tailored immunotherapy for paediatric SIRS patients (TIPS) coordinated by Prof. Catharina Schütz from Technic University Dresden. Methods Qualitative research methodology thought 10 semi-structured interviews. Systematic literature review grounded the interview questionnaire. Transcripts were subjected to thematic analysis by two independent researchers. Results Social justice was seen as equal chances of inclusion of different population groups in research. Socioeconomic differences were perceived as a challenge to ensure justice across various populations (N = 7). Two interviewees saw discrimination as inherent to precision medicine, which is focused on personalised treatment. Two experts viewed the exclusion of specific patients’ groups as an unsolvable problem, that only advocates for the inclusion of as many patients as possible. On the opinion of six experts individual and ethnocultural factors may influence outcomes in personalised treatment, especially considering the small sample size and the diverse populations. One medical expert, on the contrary, perceived no significant challenges associated with the heterogeneity of patients. Whether socioeconomic injustices should be addressed by guidelines and how these correspond to the rights of the patient were further discussed. Conclusions The issues of social justice accompany research in personalised medicine, including SIRS. In general, there is sensitivity to this issue, but current guidelines are too vague. As with other ethical problems, so with social justice we seem to have a rethinking of the concept, that needs further study. Key messages • In the context of SIRS personalised therapy research, there is a sensitivity to the issue of social justice, but no consensus how to ensure it. • Issues of social justice are often boiled down to equal chances of inclusion in research and equal access to treatment. In the case of personalised therapy, there seems to be more to it.