Book Review

Justice and the Human Genome Project

N Engl J Med 1995; 332:543-544February 23, 1995

Article

Justice and the Human Genome Project
Edited by Timothy F. Murphy and Marc A. Lappé. 178 pp. Berkeley, University of California Press, 1994. $28. ISBN: 0-520-08363-6

Justice and the Human Genome Project is a collection of essays based on presentations at a conference with the same title sponsored by the Department of Energy and the University of Illinois at Chicago in November 1991. The Ethical, Legal, and Social Implications (ELSI) program of the Human Genome Project derives support from both the National Center for Human Genome Research (NCHGR) at the National Institutes of Health and the Department of Energy. An extramural workshop on legal and ethical issues involved in the Human Genome Project was held in January 1991 by the NCHGR in Bethesda, Maryland. Participants in the Bethesda workshop prepared the book Gene Mapping: Using Law and Ethics as Guides (G. Annas and S. Elias, eds. New York: Oxford University Press, 1992). Both conferences and both collections of essays address social-policy questions in the field of human genetics, past, present, and future.

Applications of the Human Genome Project will raise policy questions that affect nearly all our social institutions, including our health care system. The contributors to this book and their topics are derived from broad areas of law, ethics, and philosophy. From a fundamental discussion of the value of difference to the application of differences by private insurers, the essays challenge the reader to reflect on personal values and social norms. For instance, the use of genomic information by insurance companies in calculating risk is discussed by authors with opposing views. A medical expert in insurance-underwriting guidelines argues that the disclosure of genomic information is necessary for equitable insurance costs that do not unjustly burden people at low risk. The opposite stance is taken by a professor of philosophy, who asks whether it is fair to penalize those at a genetic disadvantage.

The effect of genomic testing on the balance between private reproductive choices and public health policy is discussed in the context of legal regulation. The issue of privacy and the implications of “gene banks” are considered, and guidelines are proposed, by George Annas. Two chapters deal with eugenics movements in history and the potential dilemmas that may arise in future genomic studies, underscoring the fact that “the classification of human beings into groups, races, subgroups, and ethnic groups must be undertaken with great care.” The questions of social equity raised in this book are not unique to the Human Genome Project, but their importance has been intensified by the enormous amount of information that can potentially be derived from the human genome.

Justice and the Human Genome Project is a concise book, easily read on a late night or weekend. It will be of interest to all medical practitioners who care for patients who require genetic testing. In a broader sense, the issues of social equity and individual liberties are relevant to everyone. For the interested reader who wishes a more comprehensive view of the Human Genome Project and the ELSI program, Gene Mapping is the appropriate source.

Grace Lee, M.D.
Yale University School of Medicine, New Haven, CT 06510