Sibling Obligations in Health Care

兄弟姐妹的医疗保健义务

• 批准号: 10304913
• 负责人: Lainie Friedman Ross
• 金额: $ 5万
• 依托单位: UNIVERSITY OF CHICAGO
• 依托单位国家: 美国
• 财政年份: 2019
• 资助国家: 美国
• 起止时间: 2019-12-01 至 2022-11-30
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/10304913
• 关键词: Address; Adult; Age; Area; Back; Belief; Bioethics; Bioethics Consultants; Biological; Biological Factors; Bone Marrow; Books; Caring; Case Study; Child; Childhood; Clinical; Complex; Comprehension; Decision Making; Development; Diagnosis; Disease; Emotional; Enrollment; Environment; Environmental Risk Factor; Equilibrium; Ethical Analysis; Ethics; Evaluation; Family; Family dynamics; Family member; Genes; Genetic; Genetic Research; Genotype; Germ Cells; Goals; Health; Health Professional; Healthcare; Human Experimentation; Intervention; Intuition; Judgment; Justice; Kidney; Lead; Length; Life; Life Experience; Literature; Liver; Longevity; Manuscripts; Medical; Methodology; Moral Obligations; Morals; Organ; Organ Donations; Organ Transplantation; Penetrance; Phenotype; Process; Proxy; Psychological Factors; Psychosocial Factor; Recording of previous events; Registries; Reproduction; Reproductive Technology; Research; Resources; Risk; Running; Scientist; Siblings; Sister; Social Environment; Social Sciences; Solid; Testing; Time; Tissue Donations; Tissue Transplantation; Twin Multiple Birth; United States; Uterus; Work; Writing; assisted reproduction; base; caregiving; disability; family structure; health care settings; interest; intimate behavior; liver transplantation; primary caregiver; psychologic; reproductive; social; social factors; stem cells; surrogate decision making; theories

PROJECT SUMMARY/ABSTRACT The goal of this project is to write a book that addresses the responsibilities and obligations between siblings in health care. The reason to care about siblings is that they may be the longest relationship of our lives. It is a relationship that (usually but not always) involves a shared upbringing, shared genes and shared secrets, and they are often the most significant relationships with respect to our psychological and emotional development. The reason to care about sibling responsibilities and obligations in health care is that a diagnosis of a health problem in one sibling has health implications for the others. Sometimes it may mean that the other siblings are at increased risk for the same disorder or condition (due to genetics or environment). Other times it may mean that family resources and energy are disproportionately focused on the family member with the disorder or condition to the disappointment of the other siblings. It may also lead to a request or demand for sibling help—from information sharing to tissue or organ donation to physical care giving or proxy decision- making. The question, “What are our obligations to our siblings?”, remains largely unanswered in the philosophical literature and in the bioethics literature generally, and not just specifically in health care, despite the fact that most of us are born and raised in families with more than one child (at least in the United States (US) and the fact that these relationships persist, albeit with changing degrees of intensity, proximity, and mutuality across the lifespan. To write this book, I need to develop a normative framework with which to think about sibling relationships, obligations and responsibilities that can accommodate great variability and diversity in families and family structures. Then, the utility of this framework needs to be evaluated in various clinical settings with siblings of different degrees of intimacy, biological relatedness and proximity of age. I will use cases in five areas of health care: 1) solid organ and tissue transplantation; 2) assisted reproduction; 3) genetics; 4) human experimentation; and 5) decision making for and with siblings with disabilities. The methodology will involve an ethical analysis of case studies and classic problems that will be analyzed to achieve reflective equilibrium between the normative theory and judgments about the cases. Cases and classic problems are an important component of the book because they facilitate 1) comprehension of the complex issues and highlight the social context of intrafamilial health care responsibilities and obligations; and 2) appeal to a broad audience of health care professionals, bioethicists and other social scientists interested in sibling relationships.

项目概要/摘要 该项目的目标是写一本阐述各方之间的责任和义务的书 关心兄弟姐妹的原因是他们可能是我们最长久的关系。 这种关系（通常但并非总是）涉及共同的成长经历、共同的基因和共同的经历。 秘密，它们往往是对我们的心理和情感最重要的关系 关心兄弟姐妹在医疗保健方面的责任和义务的原因是诊断。 一个兄弟姐妹的健康问题有时可能会影响到另一个兄弟姐妹的健康。 兄弟姐妹患相同疾病或病症的风险增加（由于遗传或环境）。 可能意味着家庭资源和精力不成比例地集中在有能力的家庭成员身上 使其他兄弟姐妹失望的障碍或状况也可能导致要求或要求。 兄弟姐妹的帮助——从信息共享到组织或器官捐赠，再到身体护理或代理决策—— 制作。 “我们对兄弟姐妹有哪些义务？”这一问题在很大程度上仍未得到解答。 哲学文献和生物伦理学文献，而不仅仅是医疗保健领域，尽管 我们大多数人都是在一个以上孩子的家庭中出生和长大的这一事实（至少在美国） （美国）以及这些关系持续存在的事实，尽管强度、接近度和影响程度不断变化 为了写这本书，我需要建立一个规范的框架来思考。 关于可以适应巨大变化和多样性的兄弟姐妹关系、义务和责任 然后，需要在各种临床中评估该框架的实用性。 我将使用与不同亲密程度、生物学相关性和年龄接近的兄弟姐妹的设置。 五个医疗保健领域的案例：1）实体器官和组织移植；2）辅助生殖； 遗传学；4) 人体实验；以及 5) 为残疾兄弟姐妹制定决策。 方法论将涉及对案例研究和经典问题的伦理分析，这些问题将被分析为 在规范理论和案例判断之间达到反思平衡。 问题是本书的重要组成部分，因为它们有助于 1) 理解复杂的问题 问题并强调家庭内部医疗保健责任和义务的社会背景；2) 呼吁； 面向对兄弟姐妹感兴趣的广大医疗保健专业人员、生物伦理学家和其他社会科学家 关系。