Preface

On a frigid January evening in 1972, as I was crossing the main quadrangle of Columbia University to the law school where I was a mediocre and discontented student, I had a flash of insight. 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 temperament 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 of 28 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-off source. I have not since received such a simple, powerful directive from my subconscious.

As I pondered the idea during the next few weeks, and as I read about advances in human genetics (even then a favorite topic of science 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 extraordinarily 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 state have the right to compel individuals to undergo mandatory genetic testing? Should a physician have a right, despite the objection of his patient, 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 predisposition to violence? Should all convicted felons have a DNA sample typed and stored in a databank, thus creating a genetic version of fingerprint 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 of human 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 writing articles about an extraordinary milestone. Working together, several scientific groups have completely sequenced human chromosome 22. Now and forever, we know that portion of the 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 of the last ten or so will not even stir much public interest, until 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 fer far more good than harm? Do we even know where to begin? I am an unabashed champion of the value of genetic 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, effective 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 of genetics. 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

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