Socialising Ethics: The Social and Ethical Implications of Type 1 Diabetes Screening in Childhood

Type 1 diabetes (T1D) is an autoimmune condition rendering the body incapable of processing glucose, with a wide range of health impacts. Whilst most individuals are diagnosed with T1D following symptoms, there has recently been a shift towards the identification of asymptomatic children at-risk of future T1D (by detecting autoantibodies in blood). Identified 'at-risk' children potentially benefit in a number of ways. They are at lower risk of being diagnosed with T1D as an emergency, they can be offered into clinical trials of therapies designed to delay/prevent T1D, and they may also be eligible for treatment with novel therapies for delaying T1D onset which may become available. However, there is currently no effective treatment for those 'at-risk', nor is it certain that they will develop T1D, leading to concerns around psychological harms and the creation of 'patients-in-waiting'.

Research Question: How are ethical principles constructed and prioritised by parents, health professionals, and policy makers in appraisals of the harms and benefits of T1D screening in childhood?

The project will also investigate: the role of social factors (including prior experiential knowledge of diabetes) in the way that ethical principles are constructed and prioritised; what the key areas of ethical conflict and resonance in the appraisal of the harms and benefits of T1D screening in childhood across stakeholder groups are; which social/ethical theories account for the prioritisation of ethical values by different stakeholder groups; how the ethical values espoused by stakeholder groups map to the UK National Screening Committee (NSC) Ethics Framework.
This project involves three key phases.

Phase 1: Secondary Analysis
20-30 parent transcripts from the ELSA study (University of Birmingham) will be subject to secondary analysis. Purposive maximum variation sampling will be employed to ensure diversity of backgrounds and perspectives. A grounded theory approach to analysis will be used to draw out constructions of harms, benefits and risk.

Phase 2: Deliberative Focus Groups and Qualitative Interviews
Phase 1 data will be used to create vignettes that will be presented to four deliberative parent focus groups, including both screening accepters and decliners (n= 6 per group, recruited through ELSA and the BOX study, University of Bristol). Three of the focus groups will be made up of parents who accepted screening for their child, and one of parents who declined. The focus groups will use a socially informed empirical bioethics approach, designed to draw out participants' normative constructions of ethical principles (e.g. consent, autonomy) and the way they are ordered within responses to the vignettes.
10-15 semi-structured qualitative interviews (online/phone) will also be conducted with healthcare professionals and members of the UK NSC and/or its subcommittees. The vignettes will be used to prompt perceptions of harms/benefits as per focus groups.
Comparative analysis within/across focus groups and interviews will result in sets of socially situated moral principles as prioritised by different stakeholder groups.

Phase 3: Comparative Analysis
A data meta-matrix will be created for a comparative analysis of the prioritised principles of different stakeholder groups, set alongside the principles espoused by the UK NSC Ethics Framework.
The findings will contribute to the evaluation of T1D screening by policy advisors (UK NSC), by providing much needed insight into 'social values'- the ethical principles prioritised by stakeholders. This project will also directly contribute to ethical and social theory, as well as the development of ethical guidance to inform the implementation of T1D screening in children.