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An Invitation to Genetics in the 21St Century

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An Invitation to Genetics in the 21St Century A t the moment of conception, the genetic blueprint At the invitation of Leon Botstein, president of Bard ~-~ of a new life comes into being. E is an intricate College, and with the sponsorship of Los Alamos National message differing in slight but crucial ways from one Laboratory, some of the leading participants in the Genome human being to another. So far molecula biologists have Project gathered at Leon’s home on December 5, 1.990, to decoded only a tiny fraction of this set of instructions; answer questions about the goals and ethical implications of we live for the most part in ignorance of how our genetic the project. Los Alamos Science offers this presentation inheritance will influence the course of our lives. The goal not because the questions were all-inclusive or the answers of the Human Genome Project, a fifteen-yea, international definitive but because the issues raised, both philosophical research effort, is to read the entire contents of that message and practical, will become more pressing as information and to provide the tools for deciphering the genetic differ- from the Genome Project accumulates. We hope to ences among us. Are we ready as individuals and as parents stimulate discussion among you, your family, and your for the emergence of this new knowledge? Are we ready friends as we prepare to consider and act upon the resulting as a society? As a species? information with wisdom, compassion, hope, and openness. Genetics in the 2 ls’ Century Leon Botstein: Ladies and gentlemen, special DNA sequence that makes up clinics? What positive effects might let me welcome you. The topic this the end of every human chromosome. come from the resulting technology? evening is the Human Genome Project, Finally, Nancy Wexler, President of the Will there be a revolution in health care? and my role is to explain the format Hereditary Disease Foundation and an What could prevent us from taking full of the discussion and to introduce the Associate Professor at the Department of advantage of such benefits? What are panel. This is an unusual opportunity Neurology and Psychology at Columbia the social effects? Why might it lead to to participate in a discussion about an Presbyterian Medical College. Nancy greater social inequality, or conversely, important issue with the people who is Chairman of the Department of to greater homogeneity? Is there a valid ought to know what it’s all about. First, Energy–National Institutes of Health concern with respect to eugenics? Can David Botstein will give a somewhat joint working group on the ethical, we influence the human gene pool? Will brief introduction to the Project, in legal, and social issues of the Human this project affect our view of ourselves? which he will state its goals, its history, Genome Project, the group known as What myths will be challenged by this and why he thinks it’s necessary. Then, ELSI. I think there could not be a more research? What theological questions each of the panel members will be given distinguished and appropriate panel for might be invoked by this work? Is the opportunity to make an opening this discussion. there some issue of responsibility which statement. After that, the floor will be might lead us not to pursue this project? open to questions from the audience. Does the individual own the rights to I’m certain that this is not a particularly his or her own genome? What are reticent panel, so there’s no need for the legal implications? Finally, do me to moderate—but rather, perhaps, to people really want to know about their adjudicate. genetic inheritance? These questions are Now I will introduce the panelists. probably more than enough to generate David Baltimore is President of Rock- considerable controversy. I turn the floor efeller University. He, along with over to you, David. Howard Temin and Renato Dulbecco, won the Nobel Prize for the discovery David Botstein: One of the challenges of reverse transcriptase. I can’t refrain we have not yet fully met is explaining from mentioning that he is a graduate to people who are not directly involved of Swarthmore College, a small liberal in the Human Genome Project what arts college like Bard College. Next, my we are doing and why we are doing brother, David Botstein, Chairman of the it. As a result, a consj derable amount Genetics Department at Stanford and a of misunderstanding has arisen. My long-time member of the faculty at MIT. purpose in this introduction is not to He invented the use of DNA markers give you a hyper-rapid education in and is one of the initiators of the Human There are many questions which were biology, but instead to introduce a few Genome Project. Next is James Dewey put forth by a variety of people interested of the basic terms and to present the Watson, who, together with Francis in the Human Genome Project. What are fundamental ideas around which this Crick and Maurice Wilkinson, won the the goals of the Project? What has been project is based. Nobel Prize for discovering the structure achieved and what might be achieved First, and I’m sure most of you know of DNA. Dr. Watson is Director of in twenty years? What are the main this, our genes are made of DNA. It the Human Genome Initiative of the scientific arguments against the Project, has been clear for about fifty years National Institutes of Health and also what are the scientific arguments for that, to the first appro~imation, all of the author of a classic book on the the Project, and how important is it a person’s inherited characteristics are character of scientific discovery—The compared with other scientific projects? specified by the DNA of the fertilized Double Helix. Also here tonight is What are the obstacles to its success? egg. Therefore, to understand the entire Robert Moyzis, Director of the Center How do scientists share the results of message encoded in a person’s DNA for Human Genome Studies at Los this project? How likely is it that the is to know everything about his or her Alamos National Laboratory and the technology coming from this project will inheritance. I did not say transcribe or discoverer of the human telomere, a be available to physicians, hospitals, and put on optical disk. I said understand, 316 Los Alarnos Science Number 20 1992 — Genetics in the 21s’ Century we have a very complicated technical cancer-causing gene, and much of the task, first in trying to find all those genes biochemistry of the oncogene has been and then in trying to understand what worked out in great detail. In fact, the they do. In the last ten years it has relationship between the two genes gave become clear that we have the technical a logical explanation as to what might means to at least begin to write down cause neurofibromatosis tumors. So to the sequence of all the base pairs in make the discovery of genes meaningful the human genome. The question is: as well as easy, we need to know the Why do it? Much of the opposition to sequences of genes in experimental the Human Genome Project is based on organisms. Yeast, for example, has the fact that just knowing the sequence genes that are very similar to those of base pairs doesn’t mean anything in of higher organisms. However, even itself. The genetic code lets you turn though the yeast genome is 250 times the base sequence of a gene into the smaller than our own, the yeast genome amino-acid sequence of a protein, but has been only partially sequenced. even th~t doesn’t mean anything by current technology. It’s as if you had We have the technical a row of hieroglyphics and a way of transcribing them into Urdu—but you means to at least and a complete understanding of the don’t understand or speak Urdu. That’s begin to write down message is a long way off. The big deal pretty much the situation we’re in. about a person’s DNA—aside from the The next question is: How can we the sequence of all fact that it encodes all the information for give meaning to the proteins that are the base pairs in the making the person—is that it contains derived from the genes? Sometimes an extremely large number of paired there is a way because we’ve been human genome The nucleotide bases—six billion. Simply collecting information about genes and question is: Why do it? determining the base sequence of all proteins for a long time. We know that DNA is a big technical problem. globin. It’s a protein that has been In fact, determining the base sequence studied for fifty years; it carries oxygen The first proponents of the Human of any segment of DNA is one of the in the blood. We know insulin, a protein Genome Project proposed simply to go triumphs of modern biology. that regulates the sugar in the blood. ahead and sequence the entire human For about ten years people have been We know the sequences of the genes genome with the current technology. able to sequence a little bit of DNA here, for these proteins. The functions of Many people, including me, were ap- and a little bit there. That is, they’ve these proteins have been studied in palled by this proposal because-it was been able to determine the sequence of lower organisms, such as bacteria, yeast, stupid.
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