Research on genetic hypersensitivities to environmental exposures: Moral and social issues

Current projections suggest that the Human Genome Project (HGP) will complete the first human genetic reference sequence (a map of all the genes in the human body) by the year 2003. The completion of the HGP reference sequence represents a crowning achievement in molecular genetics and marks the beginning of a new era in the study of human disease. The complete HGP reference sequence will allow researchers to explore the effects of genetic variation on the development of complex diseases, such as asthma, cancer, diabetes, and coronary heart disease.;The expected availability of the HGP reference sequence is prompting researchers to plan more comprehensive studies of genetic influences on disease. One example of this trend is the Environmental Genome Project (EGP), sponsored by the National Institute of Environmental Health Sciences, one of the National Institutes of Health. The EGP plans to study how genetic differences between individuals may influence how they respond to adverse environmental exposures. By identifying potential genetic hypersensitivities to environmental exposures, the EGP promises to advance our understanding of disease susceptibility and thereby assist in the development of disease-prevention and intervention strategies. Nonetheless, despite these potential health benefits, projects like the EGP also present a number of ethical, legal, and social concerns.;This dissertation examines the moral and social issues presented by the study of genetic hypersensitivities to adverse environmental exposures. These issues include concerns about: (1) the increasing geneticization of complex disease, (2) the protection of human subjects in molecular epidemiologic research, and (3) the potential implications of genetic-susceptibility research for socially identifiable groups. The recent explosion of interest in genetic susceptibility to complex disease makes these issues of great practical importance. Moreover, in addition to their practical relevance, examining these issues also helps to shed light on traditional questions in research ethics.;A central theme of the dissertation is that the study of genetic hypersensitivities to environmental exposures presents new moral and social issues. Bioethicists often focus their discussions of genetic research on rare, highly predictive "disease genes". Such genetic influences on disease, however, are the exception rather than the rule. As researchers begin to examine more subtle genetic influences on disease, it is important that we consider the extent to which these discussions of rare, highly predictive disease genes are appropriate guides in other context. This topic has not been fully explored by ethicists and other commentators on genetic research. A central aim of the dissertation is to illustrate how the moral and social issues presented by the study of more subtle genetic influences on disease differ from those considered in connection with highly predictive disease genes.