Distibutive Justice in Human Genetic Variation Research

人类遗传变异研究中的分配正义

• 批准号: 7270418
• 负责人: Sandra Soo-Jin Lee
• 金额: $ 12.1万
• 依托单位: STANFORD UNIVERSITY
• 依托单位国家: 美国
• 财政年份: 2003
• 资助国家: 美国
• 起止时间: 2003-08-01 至 2009-01-31
• 项目状态: 已结题
• 来源: https://reporter.nih.gov/project-details/7270418
• 关键词: Address; Award; Biomedical Research; Cells; Characteristics; Collaborations; DNA; Depth; Development; Disease; Empirical Research; Ethnography; Faculty; Foundations; Genes; Genetic; Genetic Identity; Genetic Markers; Genetic Variation; Genomics; Goals; Guidelines; Haplotypes; Health Benefit; Health Care Costs; Healthcare; Human; Human Genetics; Human Genome; Human Genome Project; Individual; Industry; Interview; Justice; K-Series Research Career Programs; Lead; Maps; Medical Research; Medicine; Mentors; Participant; Pharmaceutical Preparations; Pharmacogenomics; Pharmacotherapy; Population; Population Genetics; Process; Range; Reaction; Research; Research Ethics; Research Institute; Research Personnel; Research Project Grants; Resources; Sampling; Scientist; Technology; Therapeutic; United States; Variant; base; commercialization; dosage; drug discovery; ethical legal social implication; health disparity; human subject; improved; programs; prospective; research to practice; skills; social

DESCRIPTION (provided by applicant): The Mentored Scientist Development Award in Research Ethics will fulfill three main goals: 1) to obtain a broad and in-depth foundation in research ethics and to develop research skills in ethical reasoning and analysis in order to become a resource for those pursuing biomedical research; 2) to build a research program on the ethical implications of human genetic variation research for social distributive justice; and 3) to become an independent investigator in the field of research ethics upon the completion of this career development award. These goals will be accomplished through mentoring, formal coursework, faculty collaborations, and empirical research. The research plan focuses on social distributive justice in human genetic variation and pharmacogenomics research. The ethical principle of justice requires that medical research provide equitable distribution of benefits to human subjects. This project investigates whether pharmacogenomic research involving racially identified populations fulfills this principle in the fair, equitable and appropriate distribution of health benefits to all populations within the United States. The specific aims of the proposed project are: 1) to critically examine the assumptions and practice of human genetic variation research and its impact on current trajectories of pharmacogenomics research and to identify the major prospective recipients of these studies.; 2) to identify the meaning of justice for various stakeholders, including scientists, prospective human subjects, industry leaders, and policymakers, in pharmacogenomics research; 3) to examine the implications of pharmacogenomics research on the status of health disparities between racially identified populations; and 4) to develop an ethical framework in which to address social distributive justice in pharmacogenomics research that will lead to specific guidelines for those who apply this research to practice. The research will consist of an ethnographic study involving participant observation, in-depth interviews, and archival analysis.

描述（由申请人提供）：研究伦理学的指导科学家发展奖将实现三个主要目标：1）获得研究伦理学的广泛而深入的基础，并在道德推理和分析方面发展研究技能，以成为追求生物医学研究的人的资源； 2）建立一项研究计划，讨论人类遗传变异研究对社会分配正义的伦理含义； 3）在完成职业发展奖后成为研究伦理领域的独立研究者。这些目标将通过指导，正式课程，教师合作和实证研究来实现。该研究计划着重于人类遗传变异和药物基因组学研究中的社会分配正义。道德原则要求医学研究为人类受试者提供公平的利益分配。该项目调查了涉及种族认同人口的药物基因组研究是否在公平，公平且适当地分配美国境内所有人口的健康福利中符合这一原则。拟议项目的具体目的是：1）批判性地检查人类遗传变异研究的假设和实践及其对当前药物基因组学研究轨迹的影响，并确定这些研究的主要前瞻性接受者。 2）在药物基因组学研究中，为各种利益相关者确定司法的含义，包括科学家，潜在的人类受试者，行业领导者和政策制定者； 3）研究药物基因组学研究对种族认同人群之间健康差异状况的影响； 4）开发一个道德框架，以解决药物基因组学研究中社会分配正义的问题，这将为那些将本研究应用于实践的人提供特定的准则。该研究将包括一项人种学研究，其中涉及参与者观察，深入访谈和档案分析。

项目成果

personalized medicine and pharmacogenomics: ethical and social challenges.

• DOI: 10.1517/17410541.2.1.29
• 发表时间: 2005-03-01
• 期刊: Personalized medicine
• 影响因子: 2.3
• 作者: Lee, Sandra Soo-Jin

Medicine. Racing forward: the Genomics and Personalized Medicine Act.

• DOI: 10.1126/science.1165768
• 发表时间: 2009-01-16
• 期刊: Science (New York, N.Y.)
• 作者: Lee SS;Mudaliar A
• 通讯作者: Mudaliar A

The ethics of characterizing difference: guiding principles on using racial categories in human genetics.

• DOI: 10.1186/gb-2008-9-7-404
• 发表时间: 2008
• 期刊: GENOME BIOLOGY
• 影响因子: 12.3
• 作者: Lee, Sandra Soo-Jin;Mountain, Joanna;Koenig, Barbara;Altman, Russ;Brown, Melissa;Camarillo, Albert;Cavalli-Sforza, Luca;Cho, Mildred;Eberhardt, Jennifer;Feldman, Marcus;Ford, Richard;Greely, Henry;King, Roy;Markus, Hazel;Satz, Debra;Snipp, Matthew;Steele, Claude;Underhill, Peter
• 通讯作者: Underhill, Peter