Distibutive Justice in Human Genetic Variation Research

研究伦理学指导科学家发展奖将实现三个主要目标：1)获得广泛而深入的研究伦理学基础，并发展伦理推理和分析的研究技能，以成为从事生物医学研究的人的资源；2)建立人类遗传变异研究对社会分配正义的伦理意义研究项目；3)在完成本职业发展奖项后，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。该研究计划侧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。正义的伦理原则要求医学研究为人类受试者提供公平的利益分配。这个项目调查药物基因组学研究是否涉及种族识别人群，在公平、公平和适当地向美国所有人群分配健康利益方面符合这一原则。该项目的具体目标是：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潜在接受者；2)确定药物基因组学研究中各种利益相关者（包括科学家、潜在人类受试者、行业领导者和政策制定者）的正义意义；3)探讨药物基因组学研究对不同种族人群健康差异状况的影响；4)建立一个伦理框架，以解决药物基因组学研究中的社会分配正义问题，这将为那些将这项研究应用于实践的人提供具体的指导方针。这项研究将包括一项民族志研究，包括参与观察、深度访谈和档案分析。

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.