THE ETHICS OF IDENTIFYING RACE IN THE NEW GENETICS

新遗传学中种族识别的伦理学

• 批准号: 6402713
• 负责人: Sandra Soo-Jin Lee
• 金额: $ 4.8万
• 依托单位: STANFORD UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2001
• 资助国家: 美国
• 起止时间: 2001-09-20 至
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/6402713
• 关键词: biotechnology; culture; ethics; genetic polymorphism; genetic screening; genetic techniques; genetics; health related legal; health science research; human population genetics; human rights; human subject; interview; politics; racial /ethnic difference; social group; social integration; sociology /anthropology

This ethnographic study examines the social and ethnical implications of the use of categories of race and ethnicity in human genome research. The specific goals of the proposed research are: 1) to trace the history of public discourse on categories of race and ethnicity within biomedicine as it has contributed to the design of current genetic research; 2) to identify the sociopolitical stakes in discovering difference between groups identified as racial and/or ethnic in the research for single nucleotide polymorphisms (SNPs); 3) to critically examine the racial categorization of cell repositories and the use of human variation panels in genetic research; 4) analyze the meaning of 'community' in current efforts to include racially and ethnically identified population in the discourse surrounding genomic research and technology; and 5) to discover the ethnical implications of the deployment of race and ethnicity in genomics research and to identify culturally appropriate mechanisms in protecting both individuals and communities from potential research related harms. This study will utilize anthropological methods of participant observation, semi-structured interviews, survey administration and archival research.

这项人种学研究探讨了人类基因组研究中使用种族和民族类别的社会和民族含义。本研究的具体目标是：1）追溯生物医学中关于种族和民族类别的公共话语的历史，因为它有助于当前遗传学研究的设计：2）确定在单核苷酸多态性（SNP）研究中发现被确定为种族和/或民族的群体之间差异的社会政治利害关系; 3）批判性地审查细胞库的种族分类和人类变异面板在遗传研究中的使用; 4）分析“社区”在当前努力中的意义，以将种族和民族识别的人口纳入围绕基因组研究和技术的话语中; 5）发现在基因组学研究中使用种族和族裔的伦理含义，并确定文化上适当的机制，以保护个人和社区免受与研究相关的潜在危害。本研究将运用人类学的参与观察、半结构式访谈、调查管理和档案研究等方法。