Cultural and Ethical Issues in Genetic Family Studies

描述(申请人提供)：问题：有遗传易感性 一家系糖尿病肾病患者的发病情况 2型糖尿病(T2 DM)病史。对受试者的研究知之甚少 对遗传病(即糖尿病肾病)的信念和态度以及参与 遗传家族研究(GFS)。了解文化和道德问题 与政府飞行服务队有关的工作将加强查明过程并建立 患者及家属的遗传咨询策略 2型糖尿病和糖尿病肾病病史。 具体目标：我们设计了一项人类学研究：1)确定 受试者对糖尿病肾病遗传性方面的信念是否会影响 参与GFS，2)探索受试者的意见和伦理意识 与他们参与相关的问题和风险，以及3)民族分析 对参与全球金融服务的态度不同。 方法：采用定性和定量相结合的方法进行测定。 定性结论的概括性，增强可解释性 量化数据。研究将分两个阶段进行： 定性阶段I(24个月)将基于探索性设计，使用 开放式问题、探究和参与者的民族志方法 观察。我们将从正在进行的家庭调查中招募对象 德克萨斯大学健康科学分校的肾病和糖尿病(FIND)研究 圣安东尼奥中心(UTHSCSA)。将进行半结构化面试 有2型糖尿病家族史的糖尿病肾病患者40例及其亲属40例。一个 另外纳入20例无2型糖尿病家族史的糖尿病患者。多数 面试将在UTHSCSA进行，持续约60分钟。他们将会是 磁带录制、转录和内容分析，以确定主题 案子。基于这些主题，我们计划开发一份量化问卷 将首先对以下项目的参与者进行测试、验证、修订和应用 我们中心招收了不同种族的学生。在量化阶段II (36个月)，我们将把这份问卷邮寄给更多的 来自不同种族的参与者(约700人)在其他 参与发现的中心。此阶段的数据分析将包括以下两个方面 单变量和多变量统计。统计软件包SAS和 将利用Minitab执行这些分析。 结果：我们希望获得以下数据：(1)受试者对基因的信念 疾病和参与全球食品安全服务。(2)招聘者的家庭观 招生。(3)参与者的回答与人口统计的关联 特点。(4)对参与的态度存在种族差异 政府飞行服务队。

DESCRIPTION (provided by applicant): Problem: There is a genetic susceptibility for the development of diabetic nephropathy (DN) in patients with a family history of type 2 diabetes mellitus (T2DM). Little is known about subjects' beliefs and attitudes towards genetic diseases (i.e., DN) and participation in genetic family studies (GFS). Understanding cultural and ethical issues associated with GFS will enhance the ascertainment process and establish strategies for genetic counseling of patients and relatives with a family history of T2DM and DN. Specific Aims: We have designed an anthropological study to: 1) determine whether subjects' beliefs about the hereditary aspects of DN influence participation in GFS, 2) explore subjects' opinions and awareness of ethical issues and risks related to their participation, and 3) analyze ethnic differences in attitudes toward participation in GFS. Methods: We will combine qualitative and quantitative methods to determine the generalizability of the qualitative findings and enhance the interpretability of the quantitative data. The study will be conducted in two phases: The Qualitative Phase I (24 months) will be based on an exploratory design using ethnographic methods of open-ended questions, probing, and participant observation. We will recruit subjects from the ongoing Family Investigation of Nephropathy and Diabetes (FIND) study at the University of Texas Health Science Center at San Antonio (UTHSCSA). Semi-structured interviews will be performed with 40 DN patients with a family history of T2DM and 40 of their relatives. An additional 20 DM patients with no family history of T2DM will be included. Most interviews will be conducted at UTHSCSA and last about 60 minutes. They will be tape-recorded, transcribed and content analyzed to identify themes across cases. Based on these themes, we plan to develop a quantitative questionnaire that will first be tested, validated, revised and applied to participants of different ethnic origins enrolled in our Center. In the Quantitative Phase II (36 months), we will mail this questionnaire to a larger population of participants (about 700) of different ethnic origins enrolled in other participating centers of FIND. Data analysis for this Phase will include both univariate and multivariate statistics. The statistical packages SAS and MINITAB will be utilized to perform these analyses. Outcomes: We expect to obtain data on: (1) subjects' beliefs about genetic diseases and participation in GFS. (2) recruiters' perspective on family enrollment. (3) association of participants' responses with demographic characteristics. (4) ethnic differences in attitudes towards participation in GFS.