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Published on: July 5, 2022
Psychosocial implications, acceptability and ethics of screening for paediatric type 1 diabetes: a systematic review
Lauren M Quinn1, David Stanley2, Francesca Milano3
1Institute of Immunology and Immunotherapy, College of Medicine and Health, University of Birmingham, Birmingham, UK. l.quinn.1@bham.ac.uk.
Insights
Screening for type 1 diabetes in children is acceptable to parents, despite potential anxiety. Early detection benefits are valued, but ethical considerations and evidence gaps persist.
Area of Science:
- Pediatric Endocrinology
- Public Health
- Medical Ethics
Background:
- Population screening for type 1 diabetes in children is a growing international initiative.
- Understanding parental and child acceptability is crucial for successful implementation.
- This review synthesizes current evidence on the psychosocial impact and ethics of pediatric type 1 diabetes screening.
Purpose of the Study:
- To systematically review the psychosocial impact, acceptability, and ethical considerations of screening for type 1 diabetes in pediatric populations.
- To inform the development and implementation of international screening programs.
- To identify critical evidence gaps in the field.
Main Methods:
- A comprehensive systematic search of multiple databases (MEDLINE, EMBASE, PsycInfo, etc.) was conducted.
- Included quantitative, qualitative, and mixed-methods studies assessing emotional, cognitive, and behavioral implications, acceptability, or ethics.
- Quality assessment using the Mixed Methods Appraisal Tool and Critical Appraisal Skills Checklists, followed by mixed-methods evidence synthesis.
Main Results:
- Seventy articles involving over 62,000 parents and 6,000 children were analyzed.
- Screening identification generated transient anxiety but was generally acceptable to parents who perceived benefits outweighing harms.
- Ethical themes included joint decision-making, right to results, and data integrity; pediatric blood sampling was a noted challenge.
Conclusions:
- Despite psychosocial implications, current evidence suggests pediatric type 1 diabetes screening is acceptable to participating parents/guardians.
- Further research is needed to address critical evidence gaps.
- Findings support the ongoing development of ethical and acceptable screening initiatives for pediatric type 1 diabetes.
Aims/Hypothesis:
Paediatric population screening for type 1 diabetes is emerging internationally. It is critically important to understand the acceptability of screening to inform these initiatives. In this systematic review, we aimed to assess the psychosocial impact, acceptability and ethics of screening for paediatric type 1 diabetes.
Methods:
We searched MEDLINE, EMBASE, APA PsycInfo, ASSIA, CINAHL, Web of Science, Scopus, and included quantitative, mixed methods and qualitative articles until 25 November 2025. We assessed the emotional, cognitive and behavioural implications, acceptability or ethics of type 1 diabetes early detection for parents and/or children. We used the mixed methods appraisal tool and critical appraisal skills checklists for quality assessment. We performed a mixed methods evidence synthesis, identifying key themes from qualitative data and merging with quantitative data to generate meta-inferences.
Results:
Seventy articles (12 qualitative, 57 quantitative and one mixed methods) involving 62,244 parents and 6363 children aged <18 years were included. Seven articles (10.0%) met all quality criteria (high quality), 43 (61.4%) met 60-80% of criteria (moderate quality) and 20 (28.6%) met <50% of criteria (low quality). We generated five themes and 19 sub-themes. Identification of early-stage type 1 diabetes generated anxiety, which waned over time but could recur. Overall, parents who opted into an early detection research programme valued knowing their child's risk and perceived benefits to outweigh harms, although paediatric blood sampling was considered challenging. Research ethics of screening centred on joint decision making according to the child's age, right to results disclosure and importance of data integrity. We synthesised a large pool of heterogenous studies, reflecting how understanding of early disease has evolved, but likely influencing the acceptability of screening.
Conclusions/Interpretation:
This, the most comprehensive review of the literature to date, demonstrates that despite the emotional, cognitive and behavioural implications, thus far, screening and early detection of paediatric type 1 diabetes appears to be acceptable to parents/guardians who take part but critical evidence gaps remain.
Trial Registration:
PROSPERO registration no. CRD42024566937 FUNDING: EDENT1FI (grant no. 101132379).
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