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

1型糖尿病（T1D）是一种自身免疫性疾病，导致身体无法处理葡萄糖，对健康有广泛的影响。虽然大多数人都是在出现症状后被诊断为T1D，但最近有一种转变，即通过检测血液中的自身抗体来识别未来有患T1D风险的无症状儿童。已确定的“风险”儿童可能在许多方面受益。他们被紧急诊断为T1D的风险较低，他们可以参加旨在延迟/预防T1D的治疗的临床试验，他们也可能有资格接受可能出现的延迟T1D发病的新疗法的治疗。然而，目前还没有针对这些“高危人群”的有效治疗方法，也不确定他们是否会患上T1D，这导致了人们对心理伤害和“候诊患者”产生的担忧。研究问题：在评估儿童时期T1D筛查的利弊时，父母、卫生专业人员和政策制定者如何构建和优先考虑伦理原则？该项目还将调查：社会因素（包括先前对糖尿病的经验知识）在构建和优先考虑伦理原则的方式中的作用；在评估儿童T1D筛查的危害和益处时，利益相关者群体的道德冲突和共鸣的关键领域是什么；哪些社会/伦理理论解释了不同利益相关者群体对道德价值观的优先级；利益相关者团体支持的道德价值观如何映射到英国国家筛选委员会（NSC）道德框架。这个项目包括三个关键阶段。第1阶段：二次分析来自ELSA研究（伯明翰大学）的20-30份父母成绩单将进行二次分析。有目的的最大变异抽样将被采用，以确保背景和观点的多样性。基于理论的分析方法将用于绘制出危害，利益和风险的结构。第二阶段：审议焦点小组和定性访谈第一阶段的数据将用于创建将呈现给四个审议性家长焦点小组的小插曲，包括筛选接受者和拒绝者（每组n= 6，通过ELSA和布里斯托尔大学BOX研究招募）。三个焦点小组将由接受筛查的家长和一个拒绝筛查的家长组成。焦点小组将使用一种社会知情的经验生物伦理学方法，旨在引出参与者对伦理原则（例如同意、自主）的规范构建，以及在对小片段的回应中对这些原则进行排序的方式。还将与保健专业人员和英国国家安全委员会和/或其小组委员会成员进行10-15次半结构化定性访谈（在线/电话）。这些小插曲将被用来根据焦点小组提示对危害/益处的认识。焦点小组内部/跨焦点小组和访谈的比较分析将产生不同利益相关者群体优先考虑的一系列社会地位的道德原则。第三阶段：比较分析将创建一个数据元矩阵，用于对不同利益相关者群体的优先原则进行比较分析，并与英国国家安全委员会道德框架所支持的原则一起设置。研究结果将有助于政策顾问（英国国家安全委员会）对T1D筛查的评估，为“社会价值”提供急需的见解——利益相关者优先考虑的道德原则。该项目还将直接促进伦理和社会理论，以及伦理指导的发展，为儿童T1D筛查的实施提供信息。

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.