CONCEPTS OF RACE & ETHNICITY IN GENETICS RESEARCH

(申请人摘要)：拟议的培训和研究计划 将给予亨特博士所需的知识和技能来检查和 建设性地解决生物医学看待和代表种族和 少数族裔群体在医学研究和干预工作中的作用 尤其专注于遗传学研究和实践。这将使她 促进建立标准和政策，以确保 概念和方法上的严谨是设计、解释和 种族和民族差异在疾病研究中的应用 分布与健康行为。一个由著名专家组成的全国性小组 研究伦理，以及遗传学研究和实践的伦理，将作为 导师和顾问。综合培训将包括参加 国家讲习班和会议、参加课程和研讨会 并开展了一套精心监督指导的伦理道德中心 读数。除了学习研究伦理之外，为了确保 有足够的知识基础来进行基因研究，亨特博士将 还要完成一些医学遗传学和统计学的课程和读物。 亨特博士将进行研究，研究基因科学家和 临床医生将种族和民族的概念融入他们的工作中。当在 近年来，人们对了解种族和文化差异越来越感兴趣 民族分布的遗传特征和遗传病的基础 种族和族裔群体的定义和分类以及 解释和回应观察到的差异的原则还没有 表达得很清楚。采用定性和定量相结合的方法， 拟议的研究将探索种族和族裔是如何定义的，以及 分类；关于种族和民族差异的隐含的社会结构 可能正在影响这些概念和做法；以及未经审查的方式 种族和民族差异的结构可能会影响遗传知识 被解释和应用。具体目标是：1)确定 遗传学家和临床医生对人类免疫缺陷的认知和期望 种族和民族对他们工作的重要性。2)描述种族和 基因科学家了解种族以及如何进行分类 临床医生在他们的研究和实践中。3)探索研究结果如何 关于种族和民族相关性的临床经验是 由基因科学家和临床医生解释和应用。

(Applicant's Abstract): The proposed training and research plan will give Dr. Hunt the knowledge and skills required to examine and constructively address the ways biomedicine views and represents ethnic and racial minority groups in medical research and intervention efforts, particularly focusing on genetics research and practice. This will enable her to contribute to the establishment of criteria and policies which assure that conceptual and methodological rigor underlie the design, interpretation and application of research on racial and ethnic differences in disease distribution and health behaviors. A national group of prominent experts in research ethics, and the ethics of genetics research and practice, will act as mentors and advisors. The comprehensive training will include attending national workshops and conferences, attending courses and seminars offered at ethics centers and carrying out a set of carefully supervised directed readings. In addition to studying research ethics, in order to assure an adequate knowledge base to conduct studies on genetic research, Dr. Hunt will also complete some courses and readings in medical genetics and statistics. Dr. Hunt will carry out research examining how genetic scientists and clinicians integrate concepts of race and ethnicity into their work. While in recent years there has been increasing interest in understanding the racial and ethnic distribution of genetic characteristics and genetic diseases, the basis of the definition and classification of racial and ethnic groups and the principles for interpreting and responding to observed differences have not been well articulated. Using a combined qualitative and quantitative approach, the proposed research will explore how race and ethnicity are defined and categorized; how implicit social constructs about racial and ethnic differences may be affecting these concepts and practices; and ways that unexamined constructs of racial and ethnic difference may influence how genetic knowledge is interpreted and applied. The specific aims are to: 1) Identify the perceptions and expectations of genetic scientists and clinicians regarding the importance of race and ethnicity to their work. 2) Describe how race and ethnicity are understood and how classifications are made by genetic scientists and clinicians in their research and practice. 3) Explore how research findings and clinical experiences regarding the relevance of race and ethnicity are interpreted and applied by genetic scientists and clinicians.