Access to the Genome: The Challenge to Equality

by Maxwell J. Mehlman, Jeffrey R. Botkin

Overview

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.

Product Details

ISBN-13:	9780878406784
Publisher:	Georgetown University Press
Publication date:	01/01/1998
Edition description:	New Edition
Pages:	160
Product dimensions:	6.00(w) x 9.00(h) x 0.46(d)
Lexile:	1530L (what's this?)
Age Range:	18 Years

About the Author

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.

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

What People are Saying About This

Journal of Medical Ethics

Engaging and accessible highly recommended to the interested reader and perhaps as a course book.

From the Publisher

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

Editorial Reviews

Reviewer: Andrea Gurmankin(University of Pennsylvania)
Description: In this book the authors take seriously the maxim that "one day, genetics will create a different kind of social stratification between have and have-not." It begins as an analysis of current and developing genetic technologies, and creeps toward a dystopian study of the implications of unequal access to these techniques, wherein a world in which genes obliterate the possibility of democracy is created.
Purpose: The purpose is to alert readers to the impending societal harm of dividing society into those who have access to genetic technologies and those who do not, or into the genetically sound and the genetically afflicted. They then argue for a possible solution to their dystopia: a lottery system for fair, if somewhat clumsy, distribution of genetic technologies.
Audience: The clear, non-technical language suggests a book intended for the general reader, but the typesetting and bibliographical scaffolding suggest an academic readership. The issues addressed are of interest to doctors, genetic counselors, and the media, and the book deserves a broader audience.
Features: Featuring an index and eight clear and well-annotated chapters, it is well presented.
Assessment: In order to imagine the social injustices the authors predict, we must stipulate the dark, Gattaca-like world they have created. This is asking readers to swallow too much. But even if we do make this stipulation, their lottery system, random by definition, does not account for individual differences, such as the greater need of certain individuals because of their higher risk level. That said, this is a very useful tool for those working and teaching in genetics, and is a significant contribution to the growing literature in genetic and reproductive ethics more generally.

Doody's Review Service

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)

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

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 analysisthis book asks an important and difficult question that has not been adequately addressed elsewhereClearly 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

Engaging and accessible… highly recommended to the interested reader and perhaps as a course book.

Journal of Medical Ethics

3 Stars from Doody

In this book the authors take seriously the maxim that "one day, genetics will create a different kind of social stratification between have and have-not." It begins as an analysis of current and developing genetic technologies, and creeps toward a dystopian study of the implications of unequal access to these techniques, wherein a world in which genes obliterate the possibility of democracy is created. The purpose is to alert readers to the impending societal harm of dividing society into those who have access to genetic technologies and those who do not, or into the genetically sound and the genetically afflicted. They then argue for a possible solution to their dystopia: a lottery system for fair, if somewhat clumsy, distribution of genetic technologies. The clear, non-technical language suggests a book intended for the general reader, but the typesetting and bibliographical scaffolding suggest an academic readership. The issues addressed are of interest to doctors, genetic counselors, and the media, and the book deserves a broader audience. Featuring an index and eight clear and well-annotated chapters, it is well presented. In order to imagine the social injustices the authors predict, we must stipulate the dark, Gattaca-like world they have created. This is asking readers to swallow too much. But even if we do make this stipulation, their lottery system, random by definition, does not account for individual differences, such as the greater need of certain individuals because of their higher risk level. That said, this is a very useful tool for those working and teaching in genetics, and is a significant contribution to the growing literature in genetic and reproductive ethicsmore generally.

Andrea Gurmankin

Access to the Genome is an easily read book with adequate references that can be used as an introduction to the looming problems in the access to genetic technology.

Journal of the American Medical Association

After overviewing the Human Genome Project in process, the authors--one a J.D. and the other a M.D.--discuss its practical health applications and such ethical and policy challenges of, and responses to, genetic technologies as: banning them, equal access, genetic handicapping, and even genetic lotteries. Paper edition (unseen), $14.95. Annotation c. by Book News, Inc., Portland, Or.

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