THE GENETICS REVDLUTIDN This page intentionally left blank THE GENETICS REVDLUTIDN HISTDRY, FEARS, AND FUTURE DF A LIFE-ALTERING SCIENCE R D SE M. M D R G AN Greenwood Press Westport, Connecticut • London Library of Congress Cataloging4n-Publication Data Morgan, Rose M., 1935— The genetics revolution : history, fears, and future of a life-altering science / Rose M. Morgan, p. cm. Includes bibliographical references and index. ISBN 0-313-33672-5 (alk. paper) 1. Medical genetics—Research—Moral and ethical aspects. 2. Genetic engineering—Moral and ethical aspects. 3. Human cloning—Moral and ethical aspects. I. Title. [DNLM: 1. Genetics, Medical—ethics. 2. Genetics, Medical—trends. 3. Ethics, Medical. 4. Genetic Techniques—ethics. 5. Genetic Techniques— trends. 6. Genome, Human. 7. Stem Cells. QZ 50 M849g 2006] RB155.M673 2006 174.2'8—dc22 2005019205 British Library Cataloguing in Publication Data is available. Copyright © 2006 by Rose M. Morgan All rights reserved. No portion of this book may be reproduced, by any process or technique, without the express written consent of the publisher. Library of Congress Catalog Card Number: 2005019205 ISBN: 0-313-33672-5 First published in 2006 Greenwood Press, 88 Post Road West, Westport, CT 06881 An imprint of Greenwood Publishing Group, Inc. www.greenwood.com Printed in the United States of America The paper used in this book complies with the Permanent Paper Standard issued by the National Information Standards Organization (Z39.48-1984). 10 9 8 7 6 5 4 3 21 Every reasonable effort has been made to trace the owners of copyright materials in this book, but in some instances this has proven impossible. The author and publisher will be glad to receive information leading to more complete acknowledgments in subsequent printings of the book and in the meantime extend their apologies for any omissions. CDNTENTS Preface vii Part I. On the Brink of Altering Life 1 1. Recombining DNA Molecules 3 2. Splicing Life: Technological Revolution or Pandora's Box? 19 35 3. The Book of Life: The Human Genome Project 53 Part II. Beauty and the Beast 4. Laboratory Babies: New Biology, Old Morality 55 5. The Warnock Report 71 91 Part III. Fighting to Save a Gene Pool 93 6. The Human Genome Diversity Project 7. The HGDP Debate 105 Part IV. Threading an Ethical Needle 129 8. Stem-cell Research 131 9. A Major Decision 145 Part V. To Clone or Not to Clone: That Is the Question 157 10. Reproductive Cloning 159 175 11. Cloning a Human CDNTENTB Notes 193 Bibliography 203 Index 211 PREFACE The discovery of the structure of DNA by Crick and Watson, with all its biological implications, has been one of the major sci entific events of the 20th century Sir Lawrence Bragg, Nobel Prize recipient and director of the Cavendish Laboratory at Cambridge University, in the foreword to Watson's book, The Double Helix Humanity has much to learn from history In this context we are reminded that the rise of modern-day DNA technology owes its origin to the many scientific events that occurred over a relatively long period of time. Despite past successes of the various DNA technologies, however, the public has always been uneasy as to what scientists should and can do. Today, as in past, the world struggles with an ability to thread its way through an ethical minefield surrounding various genetic issues. The scientific method had its beginnings in the fifteenth and sixteenth cen turies. However, systematic experimentation in the laboratory was not carried out until the seventeenth century. Even in the early nineteenth century science and technology were not included in the mainstream of major achievements. Rather, it was a time when questions were posed about evolution, the purpose of advancement, and the nature of human beings. It was a different story from the mid-nineteenth century to end of the twenti eth century, when there were decades of enormous development in scientific knowledge. In 1865, Gregor Mendel, an Austrian monk, was credited as the first to lay the mathematical foundation of the science of genetics. Later he became PREFACE known as the "Father of Genetics." Charles Darwin's revolutionary ideas on evo lution were finally recognized during this period in time and there followed a daz zling burst of genetic information. In 1931 it took Aldous Huxley, the brilliant English author, only four months to write his most famous novel, Brave New World, Huxley used Brave New World as a warning against the misuse of science and about the consequences of a soul less technology. During this time there were significant political, philosophical, and economic changes taking place in the United States and Europe. It was a time when Adolf Hitler and the Nazi party came into power in Germany, but before Joseph Stalin's Bolshevik Revolution in the Soviet Union and before Benito Mussolini led an authoritarian, fascist Italy. In April 1953, two young scientists, James Watson and Francis Crick, eluci dated the double-helical, spiral-staircase structure of DNA that became the key to the technology of life. The dividends that resulted from Watson and Crick's discovery are too numerous to count, and today in laboratories worldwide scien tists use the information from that scientific milestone. By 1970 Watson and Crick's discovery had been known for seventeen years and a new term, recombinant DNA technology (also known as gene splicing and genetic engineering), was introduced into our vocabularies. What it meant for so ciety was a second mobilization of biology. It permitted the transfer of genetic material not only across species lines but out of the animal kingdom—for exam ple, transferring a human's insulin gene into bacteria. However, the new DNA technology had important consequences because for the first time it gave humans control over various possibilities for curing diseases. The first child ever conceived outside a mother's body under controlled conditions, Louise Brown, was born on July 25, 1978, in Oldham, England. Drs. Robert Edwards and Patrick Steptoe, English physicians who performed the IVF procedure, had taken it as their duty to satisfy the natural desire of every couple to have a child, by natural or artificial means. However, behind the beauty of Louise Brown's unique creation there lurked a beast in the form of nightmares and concerns voiced by ethicists, philosophers, theologians, lawyers, and physi cians. These individuals, on both sides of the Atlantic, warned that the medical miracle of IVF indicated the arrival of unorthodox medicine as forecast in Brave New World. In response to the heated controversy over IVF, the British government com missioned Dame Mary Warnock, of Girton College, Cambridge University, to form a committee to study recent and potential developments in medicine and science related to human fertilization and embryology. Warnock's Committee of Inquiry into Human Fertilization and Embryology eventually issued sixty-four rec ommendations. Progress in elucidating the molecular basis of disease at the genetic level con tinued to progress at a rapid rate. This was due largely to the Human Genome Pro ject (HGP), the largest and most expensive scientific study conducted since the Apollo project and the race to send a human to the moon. For the first time, there was tangible hope for the control of most genetic diseases and even some degener ative ones. In June 2001 the HGP was completed, ahead of the April 23, 2003, deadline that marked the fiftieth anniversary of Watson and Crick's discovery. VII PREFACE In 1991 a group of prominent Bay Area human geneticists and molecular bi ologists proposed to the scientific community that a five-year international study, known as the Human Genome Diversity Project (HGDP), be undertaken to deter mine variation in the human genome. The well-intended study was to be an effort to collect and preserve DNA samples from a part of the world's 4,000-8,000 en dangered populations and was designed to give insights into the origins of ancient populations. However, from its beginnings, indigenous groups voiced concerns about patenting human genes, diversion of funds, the potential for biological war fare, violation of human rights, informed consent, and biopiracy. Almost from the beginning, various indigenous groups called for a halt of the HGDP. The first authentic reproductive cloning made news on July 5, 1996, when the cloned lamb named "Dolly" (after the entertainer Dolly Parton) was born near the Roslin Institute in Edinburgh, Scotland. Essentially her mother's physical twin, Dolly was in all appearances a normal sheep, the first-ever cloned animal from a specialized (differentiated) adult cell. On January 6, 1998, Chicago physicist Richard Seed shocked the world by announcing plans to clone a human, setting off an emotionally charged national debate. As a result, U.S. president Bill Clinton immediately renewed efforts for federal legislation to outlaw both public and private attempts to clone a human. Several bills were introduced to outlaw cloning of any kind, opponents arguing that humankind would be reduced to genes. Supporters countered that therapeu tic cloning/stem-cell research had the potential to cure many major illnesses. On August 9, 2002, in a prime-time speech to the nation, President George W. Bush gave the go-ahead for limited federal funding on existing embryonic stem-cell research. Attempting to thread an ethical needle, the president's deci sion was a definite compromise that allowed him to address concerns about the willful destruction of potential human life, while giving hope to those suffering from horrible diseases that might be cured by embryonic stem-cell research. Like the arts, DNA science and thought have experienced substantial politi cal pressures. The Qenetics Revolution: History, Tears, and Future of a Life-Altering Science is a book that will confront you, the reader, with alternative points of view on complex and sensitive genetic issues. However, we are reminded that moral and ethical genetic issues are continually changing and what may not be moral and ethical today could well be acceptable in the near future. This may be come more pronounced as the skills and expertise of scientists and physicians become more advanced. As you read the book you will have a deeper understanding of some of the genetic issues that surround us today, as well as those of yesterday. In the twenty- first century, the success of the new DNA technologies will transform the course of society's thought and activity, bringing a heightened degree of social awareness and compassion. The Chinese have a pertinent saying: "May you live in interest ing times." That we do! IX