FAMILY EXPERIENCE OF GENETIC TESTING: ETHICAL DIMENSIONS

描述：（来自申请人的描述）基因检测越来越多 广泛应用。护士将提供，报告结果，并解释 基因测试的家庭;此外，他们将照顾家庭处理 与遗传相关的复杂的个人，社会和伦理问题 试验.在这一领域指导实践的研究很少。的 候选人提出一项结合定性和定量方法的研究， 探索家庭如何定义，管理和推理道德问题， 出现在四种不同类型的基因检测（三重标记筛选 唐氏综合症，囊性纤维化的携带者检测， 亨廷顿病[HD]和BRCA 1检测癌症风险）。家庭 管理风格（FMS）模型将指导本研究。有6个具体目标。 数字1和2与家庭成员的定义、管理和 关于道德问题的思考第三个是家庭成员的比较 来自同一个家庭第四个问题是，根据不同的情况， 测试的类型。第五条涉及到对不同家族管理的描述 决策风格。Numbers 6旨在探索管理风格 和心理健康的测试家庭成员。参与者将被 40个家庭的成员（四种测试类型各10名）。包容 标准包括接受过4种选定的基因测试之一，或 这样一个人的家庭成员。家庭一词的定义和成员是 自我认同只有在受试成员和 至少有一个家庭成员同意参加。面试指南将在 基于FMS模型开发，遗传检测文献，临床 研究者的经验，以及 剩下的工作是道德判断。的 定义问题测试（DIT）将用于评估道德推理模式。 接受测试的家庭成员也将完成Ryff的心理测量。 幸福感和POMS来衡量心理痛苦。数据将 分析了以下指南和技术的Knafl和艾尔斯，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.