Access to the Genome

cover art
160 pp., 6 x 9
ISBN: 9780878406784 (0878406786)

January 1998
LC: 97-37974


Table of Contents

Access to the Genome
The Challenge to Equality
Maxwell J. Mehlman and Jeffrey R. Botkin
Completion of the Human Genome Project will make possible a staggering array of new medical technologies, including new diagnostic and screening tests for inherited disorders, gene therapies, and the ability to manipulate a person's inherited, non-disease traits. Most of the attention given to the social implications of these technologies has focused on their potential to harm the individual, for example, by denying employment or insurance.

This book explores instead the potential harm to society if we unfairly distribute the enormous benefits of genetic technologies. The resulting division of society into genetic haves and have-nots would undermine the basic foundation of Western democratic society—the belief in equality of opportunity.

This book explains, in terms that can be understood by the general reader, how DNA works, what the Human Genome Project is, what these genetic technologies are and what they promise, and how they could disrupt our democratic society.

In an original contribution to the literature, the book then discusses the alternatives for avoiding the creation of a genetic underclass, ranging from halting the Human Genome Project itself to making genetic technologies available without regard to ability to pay. The authors' provocative conclusion is that a lottery in which everyone has a chance to obtain access to these technologies is the only feasible option.

This book will be of interest to anyone who wishes to learn more about the Human Genome Project and the genetic revolution that it will create, as well as those who already are familiar with the project and are concerned about the social consequences of its scientific developments.
Maxwell J. Mehlman is the Arthur E. Petersilge Professor of Law and the director of the Law-Medicine Center at Case Western Reserve University School of Law.

Jeffrey R. Botkin is an associate professor of pediatrics and medical ethics at the University of Utah.
"An easily read book… that can be used as an introduction to the looming problems in the access to genetic technology."—JAMA (Journal of the American Medical Association)

"Well written, accessible, and worth reading as an introduction to some of these futuristic issues and fears—and some provocative potential solutions."— Health Affairs

"A provocative analysis…this book asks an important and difficult question that has not been adequately addressed elsewhere…Clearly written, insightful, and timely, this book is worthwhile reading for anyone interested in health policy and a valuable addition to the growing literature on the ethical, legal, and social implications of the human genome project."—Medical Humanities Review

"A must (and quick) read for those interested in the just distribution of genetic resources. It is well organized and provides an excellent overview of the philosophical and practical issues to be considered."—Bioethics

"Engaging and accessible… highly recommended to the interested reader and perhaps as a course book."—Journal of Medical Ethics

Table of Contents
1. Introduction

2. The Human Genome Project

3. The Practical Applications of Human Genetic Technology

4. The Impact of Genetic Technologies

5. Access to Genetic Technologies

6. Genetic Technologies and the Challenge to Equality

7. Responding to the Challenge

8. Conclusion