INFORMED CONSENT & CONCEPTS OF RACE IN GENETIC RESEARCH

知情同意书

• 批准号: 6388346
• 负责人: PATRICIA A. MARSHALL
• 金额: $ 41.94万
• 依托单位: CASE WESTERN RESERVE UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2000
• 资助国家: 美国
• 起止时间: 2000-09-26 至 2003-08-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/6388346
• 关键词: African; African American; behavioral /social science research tag; breast neoplasms; culture; ethnic group; genetic disorder diagnosis; genetic polymorphism; genetic screening; genetic susceptibility; genetic techniques; genetics; genotype; health science research; human population genetics; human subject; hypertension; informed consent; interview; linkage mapping; social perception; social psychology

DESCRIPTION: (Applicant's abstract) Knowledge of the genetic code and the capacity for large-scale genotyping has fundamentally altered the character of biomedical research. To advance our understanding of the ethical dimensions of genetic research for diverse populations we will address questions that take into account concerns of the individual, scientific institutions, and the broader community. Informed consent provides the focus of the ethical exchange between investigators and study participants. We will use this social interaction as the context for exploring ethical issues associated with the implementation of collaborative international genetic research. Broader concerns of society will be addressed by examining how genetic identity and race are conceptualized in both the lay and professional communities. The proposed research builds on an extensive infrastructure of genetic epidemiological field studies being carried out in metropolitan Chicago and Nigeria. These studies are part of the NIH-funded Chronic Disease Network (CDN) and include investigations of the genetic and epidemiological determinants of hypertension and breast cancer. Currently, the process of informed consent to participate in international genetics research is not adequately understood. Simply transferring standard methods of obtaining consent from industrialized societies to developing countries is wholly inadequate, but no reasonable alternatives have yet been developed. In addition, the manner in which findings are used, and the representation of communities that are being studied to scientific and lay audiences has received very little attention in biomedical research. A reformulation of the concept of race to accommodate information on sequence variation is urgently needed. The goals of this project are to: 1) define existing processes for obtaining informed consent in genetic research on hypertension and breast cancer currently being conducted in metropolitan Chicago and Nigeria; 2) identify mechanisms to ensure culturally appropriate informed consent that are maximally informative and protective for all research participants; 3) examine the ways in which the cataloguing of new DNA polymorphisms interact with and perpetuate current concepts of race, ethnicity and culture; and 4) identify mechanisms for appropriate use of the concepts of race, ethnicity and culture in genetic epidemiological research in order to foster the development of effective clinical intervention and access to health care for all ethnic populations.

描述：（申请人的摘要）遗传密码和 大规模基因分型的能力从根本上改变了 生物医学研究。促进我们对道德方面的理解 对不同人群的遗传研究我们将解决采取的问题 考虑到个人，科学机构和 更广泛的社区。知情同意书提供了道德交流的重点 研究人员和研究参与者之间。我们将使用这个社交 互动是探索与 协作国际遗传研究的实施。更广泛 通过研究遗传认同和如何解决社会的关注 种族在外行和专业社区都概念化。 拟议的研究建立在遗传的广泛基础设施的基础上 在芝加哥大都会和 尼日利亚。这些研究是NIH资助的慢性病网络（CDN）的一部分 并包括对遗传和流行病学决定因素的研究 高血压和乳腺癌。目前，知情同意的过程 参与国际遗传学研究尚未充分理解。 简单地转移从工业化获得同意的标准方法 发展中国家的社会完全不足，但没有合理的 替代方案尚未开发。另外，发现的方式 被使用，以及正在研究的社区的代表 科学和外行观众在生物医学上几乎没有关注 研究。对种族概念的重新制定，以适应有关的信息 迫切需要序列变化。 该项目的目标是：1）定义现有的流程 关于高血压和乳腺癌的遗传研究的知情同意 目前正在芝加哥大都会和尼日利亚进行； 2）识别 确保最大程度地了解文化适当的知情同意的机制 对所有研究参与者提供信息和保护性； 3）检查方式 新的DNA多态性的分类与之相互作用并永久存在 当前的种族，种族和文化概念； 4）确定机制 在遗传中适当使用种族，种族和文化的概念 流行病学研究以促进有效的发展 所有种族人口的临床干预和获得医疗保健。