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

1型糖尿病（T1 D）是一种自身免疫性疾病，使身体无法处理葡萄糖，具有广泛的健康影响。虽然大多数人在症状后被诊断为T1 D，但最近已经转向识别未来有T1 D风险的无症状儿童（通过检测血液中的自身抗体）。被确定为“有风险”的儿童可能在许多方面受益。他们被诊断为T1 D作为紧急情况的风险较低，他们可以被提供给旨在延迟/预防T1 D的治疗的临床试验，并且他们也可能有资格接受可能可用的延迟T1 D发作的新疗法的治疗。然而，目前还没有有效的治疗那些'在风险'，也不确定他们会发展T1 D，导致周围的心理伤害和创造'病人在等待'. Research问题：如何构建和优先考虑的伦理原则的父母，卫生专业人员和政策制定者在评估的危害和好处T1 D筛查在儿童期？该项目还将调查：社会因素的作用（包括先前的糖尿病经验知识）的方式，伦理原则的构建和优先级;什么是关键领域的道德冲突和共鸣的危害和利益的评估T1 D筛查在儿童期的利益相关者群体;哪些社会/伦理理论占优先级的道德价值观由不同的利益相关者群体;利益相关者团体所支持的伦理价值如何映射到英国国家筛选委员会（NSC）的伦理框架。该项目包括三个关键阶段。第一阶段：二次分析来自艾尔莎研究（伯明翰大学）的20-30份父母成绩单将接受二次分析。将采用有目的的最大变异抽样，以确保背景和观点的多样性。第一阶段的数据将被用来创建小插曲，将提交给四个审议家长焦点小组，包括筛选接受者和拒绝者（每组n= 6，通过艾尔莎和BOX研究，布里斯托大学招募）。三个焦点小组将由接受孩子筛查的父母组成，一个由拒绝接受筛查的父母组成。焦点小组将使用社会知情的经验生物伦理学方法，旨在绘制出参与者的伦理原则（如同意，自主权）的规范性建设，以及他们的方式内的响应vignettes.10-15半结构化的定性访谈（在线/电话）也将进行与医疗保健专业人员和英国国家安全委员会和/或其小组委员会的成员。这些小插曲将被用来提示每个焦点群体对危害/益处的看法。焦点群体内/跨焦点群体的比较分析和访谈将产生一套由不同利益相关者群体优先考虑的社会道德原则。第三阶段：将建立一个数据元矩阵，对不同利益攸关方群体的优先原则进行比较分析，研究结果将有助于政策顾问（英国国家安全委员会）对T1 D筛查的评估，通过提供对“社会价值”的迫切需要的洞察力-利益相关者优先考虑的伦理原则。该项目还将直接促进伦理和社会理论，以及道德指导的发展，为儿童T1 D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.