Distributive Justice in Human Genetic Variation Research

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.