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Abraham Lincoln’s DNA and Other Adventures in Genetics Abraham Lincoln’s DNA and Other Adventures in Genetics Philip R. Reilly COLD SPRING HARBOR LABORATORY PRESS Cold Spring Harbor, New York Abraham Lincoln’s DNA and Other Adventures in Genetics All rights reserved. © 2000 by Cold Spring Harbor Laboratory Press,Cold Spring Harbor,New York Printed in the United States ofAmerica Project Coordinator Mary Cozza Production Editor Patricia Barker Interior Designer Denise Weiss Cover Designer Ed Atkeson/Berg Design Library ofCongress Cataloging-in-Publication Data Reilly,Philip,1947– Abraham Lincoln’s DNA and other adventures in genetics / by Philip R.Reilly. p.cm. ISBN 0-87969-580-3 (cloth :alk.paper)—ISBN087969-649-4 (pbk:alk.paper) 1.Human genetics—Popular works.2. Medical genetics—Popular works. 3.Genetic engineering—Popular works.I.Title. 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E-mail:[email protected] a complete catalog ofall Cold Spring Harbor Laboratory Press publications,visit our World Wide Web Site http://www.cshlpress.com For Nancy, and for Christopher,Sarah,Thomas,and Heather Contents Preface ix Introduction xiii PART1 History:Using DNA to Understand the Past 1. Abraham Lincoln:Did He Have Marfan Syndrome? 3 2. Kings and Queens:Genetic Diseases in Royal Families 15 3. Toulouse-Lautrec:An Artist despite His Genes 27 4. Old Bones:DNA and Skeletons 39 PART2 Justice:The DNA Revolution in the Courts 5. DNA Detectives:The New DNA Evidence 53 6. Cold Hits:The Rise ofDNA Felon Databanks 65 7. Genes and Violence:Do Mutations Cause Crime? 79 8. Wrongful Birth:What Should the Doctor Know? 93 PART3 Behavior:Do Genes Make Us the Way We Are? 9. Mental Illness:How Much Is Genetic? 105 10. Personality:Were We Born This Way? 117 11. Talent:Nature or Nurture? 131 12. Gay Genes:What’s the Evidence? 145 PART4 Plants and Animals:Genetic Engineering and Nature 13. Genetically Modified Organisms:The Next Green Revolution? 157 14. Transgenic Animals:New Foods and New Factories 173 15. Endangered Species:New Genes Beat Extinction 187 16. Xenotransplantation:Animal Organs to Save Humans 199 vii viii (cid:2) CONTENTS PART5 Diseases:The Genetic Revolution in Medicine 17. Cystic Fibrosis:Should Everyone Be Tested? 213 18. Breast Cancer:The Burden ofKnowing 223 19. Alzheimer Disease:Are You at High Risk? 235 20. Gene Therapy:The Dream and the Reality 247 PART6 Dilemmas:Genetic Technologies and Individual Choice 21. Genetic Testing and Privacy:Who Should Be Able to Know Your Genes? 263 22. Frozen Embryos:People or Property? 277 23. Cloning:Why Is Everyone Opposed? 289 24. Eugenics:Can We Improve the Gene Pool? 303 Bibliography 317 Index 331 Preface O n a frigid January evening in 1972,as I was crossing the main quadran- gle of Columbia University to the law school where I was a mediocre and discontented student,I had a flash ofinsight.It came at an important moment.Certain that I did not want to pursue a traditional legal career,I had been struggling for a year to find a bridge to another field. By tempera- ment a generalist, I wanted to combine my legal training with studies in some other discipline and operate at an interface between the two.I hoped to do this in a novel and creative way.I had already flirted with psychology and anthropology,but long hours in the reading room at Low Library had dissuaded me from that direction. The passage of28 years has not blurred the moment I now recall.As I hurried through the darkness toward the lights of the law school, the words just seemed to pop into my brain.“Genetics.You should study genetics.”It felt like a broadcast from some mysterious,far-offsource.I have not since received such a simple, powerful directive from my subcon- scious. As I pondered the idea during the next few weeks,and as I read about advances in human genetics (even then a favorite topic ofscience journalists),I became convinced.The early 1970s was the dawn of genetic engineering.Scientists were developing new tools that would permit them to dissect the DNA molecule,the stuff of which genes are made,in extraor- dinarily precise ways. Those tools would in time allow us to know ourselves at a more fundamental level than biologists or physicians had ever thought possible.Surely,I concluded,new insights about the structure and function of human genes,especially those that related to risk for disease, would raise profound questions for society and,thus,for law.So began a long journey which led,however circuitously,to this book. Since those days at Columbia, I have spent countless hours thinking about the impact that advances in genetics are having and will have on society. I have usually framed these as legal or ethical questions. Does the ix x (cid:2) PREFACE state have the right to compel individuals to undergo mandatory genetic testing? Should a physician have a right, despite the objection of his pa- tient,to warn close relatives about a serious genetic risk? Should the physician be liable for failing to warn? What rules should govern genetic research involving human subjects? Who may have access to archived human tissue for research purposes? Should the courts trying a criminal prosecution admit evidence that a defendant was born with a genetic pre- disposition to violence? Should all convicted felons have a DNA sample typed and stored in a databank,thus creating a genetic version of finger- print files? My interest in such questions took me on a decade-long journey. In 1973,after taking the bar exam,I became probably the first freshly minted lawyer ever to pursue graduate study in human genetics.After two years in the laboratory,I again changed course,spending a year as a fellow at Yale Law School.I then entered Yale Medical School,and the next seven years were dedicated to it and to a residency in internal medicine at Boston City Hospital.Despite the many wonderful experiences along the way,my goal never changed.I wanted to study human genetics and medicine for their own beauty,but I also hoped that the effort would give me a deeper sense of how advances in these fields might affect society.While I was pursuing this interest,the field ofhuman genetics was transformed again and again by advances in molecular biology.By the mid-1980s it was clear that our ability to discover genetic facts about ourselves was going to surpass even my wildest speculations. Today,as I redraft this preface,journalists around the world are writ- ing articles about an extraordinary milestone. Working together, several scientific groups have completely sequenced human chromosome 22.Now and forever,we know that portion ofthe human blueprint encoded in the genes that reside there.Announcements about the completed sequencing of other chromosomes will appear ever more frequently. I imagine the completion ofthe last ten or so will not even stir much public interest,un- til of course, we have the entire 3,000,000,000 base pair sequence of the human species in hand.That will be cause for celebration! The human genomic sequence has been hailed by some as the holy grail of biology. Decoding it will rank as one of the great intellectual achievements of our time. But this wonderful accomplishment has an Edenic feel.Are we competent to use genetic information in ways that con- PREFACE (cid:2) xi fer far more good than harm? Do we even know where to begin? I am an unabashed champion ofthe value ofgenetic information,but I realize that the really extraordinary benefits of genetics will only become manifest if people learn something of the science. Today, only a tiny fraction of the population can honestly claim that it has done so.We must find new,ef- fective ways to whet the world’s appetite (especially among children) for learning about genetics.Human and medical geneticists have long paid lip service to this goal,but the evidence does not suggest that past efforts have converted many people to become lay students ofgenetics.This book is an experiment of sorts,a kind of dry run to see whether I can use stories to teach about genetics. I try to present genetic concepts and facts in ways that readers will barely notice,let alone find difficult or incomprehensible. If the next phase of my journey in genetics is to publish a book that will inform readers about some of the large public issues that flow from the successful decoding of the human genome and at the same time to teach them some basic science,so be it. Philip R.Reilly