FAMILY EXPERIENCE OF GENETIC TESTING: ETHICAL DIMENSIONS

描述：(来自申请者的描述)基因检测变得越来越多 应用广泛。护士将提供，报告结果，并翻译 对家庭进行基因检测；此外，他们还将照顾家庭处理 与基因相关的复杂的个人、社会和伦理问题 测试。在这一领域，指导实践的研究很少。这个 候选人提出了一项结合定性和定量方法的研究 探索家庭如何定义、管理和推理伦理问题 在四种不同类型的基因测试中出现(三重标记筛选 对于唐氏综合征，囊性纤维化的携带者测试，突变分析 亨廷顿病[HD]和BRCA1癌症风险测试)。《家族》 管理风格(FMS)模型将指导研究。具体目标有6个。 数字1和2与家庭成员的定义、管理和 关于道德问题的推理。第三个涉及家庭成员的比较 来自同一个家庭。第四个问题是根据不同的 测试类型。第5条涉及对不同的家庭管理的描述 决策风格。数字6旨在探索管理风格 以及受测家庭成员的心理健康状况。参与者将是 来自40个家庭的成员(四种测试各10名)。包含 标准包括接受过4个选定的基因测试中的一个或 这样的人的家庭成员。定义了术语族，成员是 自我认同。只有在测试成员和 至少还有一名家庭成员同意参加。面试指南将是 基于FMS模型开发的，关于基因测试的文献，临床 调查员的经验，以及REST对道德判断的工作。这个 定义问题测试(DIT)将用于评估道德推理的模式。 接受测试的家庭成员还将完成Ryff的心理测量 幸福感，以及测量心理痛苦的POMS。数据将是 分析了Knafl和Ayers、Knafl和 韦伯斯特、迈尔斯和休伯曼，还有巴顿。

DESCRIPTION: (from applicant's description) Genetic testing is becoming more widely applied. Nurses will be offering, reporting results, and interpreting genetic tests to families; in addition they will be caring for families dealing with the complex personal, social, and ethical issues associated with genetic testing. There is little research available to guide practice in this area. The candidate proposes a study combining qualitative and quantitative methods to explore how families define, manage, and reason about the ethical issues that emerge during four different types of genetic testing (triple marker screening for Down syndrome, carrier testing for cystic fibrosis, mutation analysis for Huntington disease [HD], and BRCA1 testing for cancer risk). The Family Management Style (FMS) Model will guide the study. There are 6 specific aims. Numbers 1 and 2 are related to family member's definition, management, and reasoning about moral issues. Number 3 involves comparison of family members from the same family. Number 4 concerns how responses differ according to the type of test. Number 5 involves description of distinct family management styles of decision-making. Numbers 6 is designed to explore management style and psychological well being of the tested family member. Participants will be members of 40 families (10 from each of the four types of testing). Inclusion criteria include having undergone one of the 4 selected genetic tests or being a family member of such a person. The term family is defined and members are self identified. Families will only be studied if both the tested member and at least one other family member agree to participate. An interview guide will be developed based on the FMS model, the literature on genetic testing, clinical experience of the investigator, and Rest's work on moral judgement. The Defining Issues Test (DIT) will be used to assess patterns of moral reasoning. The tested family member also will complete Ryff's measure of psychologica well being, and the POMS to measure psychological distress. Data will be analyzed following guidelines and techniques of Knafl and Ayers, Knafl and Webster, Miles and Huberman, and Patton.