Race and Distributive Justice in Pharmacogenomics Research
PI: Sandra Soo-Jin Lee, Ph.D.
CO-INVESTIGATORS: Barbara Koenig, Ph.D. and Patricia Marshall
PROJECT DATES: 08/01/03 - 07/31/08
FUNDER: National Human Genome Research Institute, NIH
Human genetic variation research of identified populations is producing medical knowledge regarding variation among groups and how genetic variations may contribute to differential aggregate health status among populations. Pharmacogenomics is the burgeoning field aimed at elucidating the genetic basis for differences in drug efficacy and toxicity. Having its roots in 'pharmacogenetics', pharmacogenomics involves the application of genomic technologies such as gene sequencing, statistical genetics and gene expression analysis to the development and testing of drugs in clinical research trials. Since many diseases develop as a result of a combination of genetic mutations, pharmacogenomics may identify the genes that are involved in determining drug response. Pharmacogenomics research aims to identify the interplay of gene products that govern the breakdown of medications and elucidate the genetic determinants of drug effects. As such genetic characterization of patient populations is quickly becoming an integral part of the drug discovery and development process.
This research plan focuses on the biomedical principle of "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 genomic research of racially identified populations fulfills the bioethical principle of justice in the fair, equitable, and appropriate distributions of health benefits to all populations within the United States. A central objective of this research program is to determine who will be the recipients of pharmacogenomics research and whether the benefits of pharmacogenomics, including the development of personalized therapeutics, will be shared equally among racially and ethnically identified groups. Secondly, this project aims to determine whether pharmacogenomics enhances or impedes the goal of reducing health disparities between racially identified populations. By examining the scientific process associated with the identification of genetic markers in particular populations that leads to eventual commercialization of personalized drug therapies, this study will identify the trajectories guidelines with which to address concerns regarding distributive justice in pharmacogenomics research, and their implications for racially identified populations. A goal of this research is to develop a framework for considering the implications for distributive justice of research in human variation and pharmacogenomics.
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