Sibling Obligations in Health Care

兄弟姐妹的医疗保健义务

• 批准号: 10059264
• 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/10059264
• 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.

项目总结/摘要 这个项目的目标是写一本书，解决之间的责任和义务 兄弟姐妹在医疗保健。关心兄弟姐妹的原因是，他们可能是我们最长的关系， 生活这是一种关系，（通常但不总是）涉及共同的成长，共同的基因和共同的 秘密，他们往往是最重要的关系，就我们的心理和情感 发展关心兄弟姐妹在医疗保健方面的责任和义务的原因是， 一个兄弟姐妹的健康问题对其他人的健康也有影响。有时候这可能意味着另一个 兄弟姐妹患相同疾病或状况的风险增加（由于遗传或环境）。其他时候它 可能意味着家庭资源和精力不成比例地集中在家庭成员身上， 使其他兄弟姐妹失望的障碍或状况。它也可能导致要求或需求， 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定- 制作。 这个问题，“我们对兄弟姐妹的义务是什么？"，在很大程度上仍然没有答案， 哲学文献和生物伦理学文献，而不仅仅是专门在卫生保健，尽管 事实上，我们大多数人都出生在一个以上的孩子的家庭（至少在美国是这样 (US)事实上，这些关系持续存在，尽管强度、接近程度和 生命周期中的相互关系为了写这本书，我需要建立一个思考问题的规范框架 关于兄弟姐妹关系，义务和责任，可以容纳巨大的变化和多样性 在家庭和家庭结构中。然后，需要在各种临床中评估该框架的效用 与兄弟姐妹的亲密程度不同，生物相关性和年龄接近的设置。我会用 五个保健领域的案例：1）实体器官和组织移植; 2）辅助生殖; 3） 遗传学; 4）人体实验;和5）决策和与兄弟姐妹残疾。的 方法将涉及案例研究和经典问题的伦理分析， 实现规范理论与个案判断的反思平衡。经典案例 问题是这本书的重要组成部分，因为它们有助于1）理解复杂的 问题，并强调家庭内部保健责任和义务的社会背景;和2）呼吁 向广大的卫生保健专业人员、生物伦理学家和其他对兄弟姐妹关系感兴趣的社会科学家提供了一个机会， 关系。