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June 27-30, 2002 The Lodge at Vail Vail, Colorado |
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 SPEAKERS OVERVIEW |
 KEYNOTE Nicholas Wade Former Member of the Editorial Board, Science Editor (1990-96), and current Science Reporter, The New York Times; Author, Lifescript SPEAKERS Lori B. Andrews Distinguished Professor of Law, Chicago-Kent College of Law; Director, Illinois Institute of Technology’s Institute for Science, Law and Technology; Author, Future Perfect: Confronting Decisions About Genetics. Robert P. Lanza, M.D. Vice President of Medical & Scientific Development of Advanced Cell Technology, Inc., a company focused on the medical and agricultural applications of cloning technologies. Thomas H. Murray, Ph.D. President, The Hastings Center; former Director, Center for Biomedical Ethics, Case Western Reserve University School of Medicine. Lee M. Silver, Ph.D Professor of Molecular Biology and Public And Internationl Affairs, Princeton University; Author, Remaking Eden: How Genetic Engineering and Cloning Will Transform the American Family. FORUM MODERATOR Richard D. Lamm Professor, and Director of the Center for Public Policy and Contemporary Issues, University of Denver; former Governor of Colorado. FACILITATORS Marilyn E. Coors, Ph.D. Assistant Professor, University of Colorado Health Sciences Center Program for Health Care Ethics, Humanities and Law. R. Bruce Rich, Esq. Partner, Weil, Gotshal & Manges; Counsel, Association of American Publishers. Brooks Thomas Chairman, the Vail Valley Institute; former Chairman & CEO, Harper & Row, Publishers, Inc. TOP OF PAGE |
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Genetic Engineering: A Brave New World or a Bridge Too Far? Almost every day the media regales us with some new advance in the field of genetics: gene modification and sorting, stem cell research, gene and embryo cloning — the list goes on. And there seems no end in sight. We have modified crops to make them disease-resistant. Can we do the same with ourselves? Already we can choose the sex of our offspring; are designer children next? We have successfully cloned sheep and cows; are human clones next? Will we be able to "replace" lost children and other loved ones? Will we be able to immortalize ourselves? Even if only a few of these possibilities become real in our lifetimes, the legal, ethical and moral issues they raise are with us already. Genetic modification of the food chain has already resulted in extensive regulation. At this writing Congress is debating whether to make reproductive human cloning illegal. Five states have already done so. And even "therapeutic" cloning is being challenged where it is based on human embryos. A whole new profession--bioethics--has arisen to address these and similar issues. And small wonder: Rarely has human effort produced such an awesome collision of fundamental religious, scientific, legal and moral principles. Where is the path of enlightened public policy in all of this? Part of this debate may sound familiar, and indeed it is. Some of the answers are colored by one’s conviction about when life begins, or similar issues. But there is much more at stake. Our society has proven to be enormously adept at accommodating conflicting values and beliefs about many things. Darwin and the Bible have clashed before, and will again. So have Roe and Wade. But the issues here may go even deeper. It is one thing to disagree about how something that is, came to be. It is another thing to disagree about the shape of a future, when it is ours to decide and when a choice must be made. What happens when science and faith confront one another in a setting which can no longer accommodate both? These questions are not only theoretical, they are real. Is there a difference between using genetic information to cure disease and prolong life and using it to reproduce whole beings with certain desired attributes? Is one acceptable and the other not? Why, and who will decide? Will such choices be available to all or only to those who can afford them? Will we be creating some sort of genetic underclass? And what are the risks? Is there a balance of nature that will be upset if everyone lives long lives or has blue eyes and blond hair? Should there be a distinction between what can be done using public money and what can be done by the private sector? Is "therapeutic" cloning that leads to medical advances but not the birth of an individual an acceptable use of public money? If not, why not? Can it be done privately? If so, is such a distinction good public policy? And who will "own" and be able to exploit these processes? Certain stem cell research has already been held patentable in this country. Should public policy permit the lawful monopolization of life-giving processes? How are other countries dealing with these same issues? What questions have been raised and what answers formulated? Will our policies be more restrictive than those of Western Europe or Japan? If so, will important research and development migrate to such venues? Is some sort of international protocol feasible? Is there a danger that rogue states will sponsor development outside the limits accepted by the rest of the world? How could this be contained? Underlying all these questions is the quintessential one: Who will decide? Can courts resolve these issues on the basis of existing legislation? Will new laws be needed? Are there Constitutional questions of free speech and church/state separation involved? What is the role of the bioethicist in all of this? Of the international community? This seminar, the eleventh to be offered by the Vail Valley Institute, will examine these and related issues as the new century unfolds. TOP OF PAGE |
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Nicholas Wade Keynote Speaker Science Reporter, The New York Times Author, Lifescript Genetic engineering so far has been mostly talk because the main method of getting a gene into a cell has been ineffective. That method involves stripping viruses of their harmful genes, putting in helpful genes, then introducing the reconstituted virus into the cell. However, the body’s immune system defeats most of these attempts, so gene therapy with very minor exceptions has gotten nowhere in 10 years. But things are about to change. With the sequencing of the human genome, eventually we will know everything about the programming of our cells, which will allow us to use stem cells rather than viruses to insert new genes into the human body. As genetic engineering is about to take off, it’s time to consider the challenges and problems this new era will bring about. The cure of disease and enhancement of the quality of life are frequently discussed in the context of genetic engineering, but there is little discussion about engineering genes to extend the human lifespan. We are used to thinking of our bodies as perishable, like automobiles with planned obsolescence, made of parts that are destined to fail. But this is a false analogy. Our bodies are not made of perishable materials like steel and plastic, but of living cells that constantly renew themselves. Living cells are robust. Our blood cells turn over every six weeks, the skin regularly sloughs cell by cell, and cell changes result in the entire skeleton being renewed every seven years. In fact, some cells in our body are essentially immortal in the sense that they do not age. These are the germ cells, the egg and sperm cells. We know that they do not age for the simple reason that every baby is born equally young, whatever the age of its parents. Evolution could design an organism to be immortal, but there’s no point. The world is a dangerous place, full of predators, disease and accident, and an immortal animal would soon be killed in one way or another and never benefit from the considerable investment needed to make it immortal. Mice in the wild live about four months, freezing to death when cold weather comes. A mouse designed to live 100 months would never get to see 96% of them, so nature has designed mice to live in the fast lane, breeding prolifically before the barn owl strikes. Many shellfish, like the common mussel, live more than 100 years and redwoods can live beyond 1,000. Lifespan is clearly tuned by evolution to whatever is appropriate for each species’ lifestyle. This is a very provocative fact because if lifespan is tunable, that means it must be under genetic control, and once we discover the genes that regulate lifespan, we will in principle be able to manipulate it. We can already see the outlines of one way to manipulate lifespan: caloric restriction. Nature seems to have designed a general emergency stratagem into many organisms: When times are tough and food is scarce, they don’t bring their progeny into the world. Mice or rats on a balanced, nutritious diet with 30% fewer calories than normal live 40% longer than usual, although their fertility decreases. Monkey experiments are under way to see if the same holds true for primates. When we identify the fundamental genes that control lifespan itself, the way we manipulate them will depend on their nature and how they act. If some biological clock needs to be present in every cell in the body, the genetic manipulation would need to be made in the germ cells or the early embryo. But if longevity genes are needed in only a few cells, perhaps they can be retrofitted into the body by being inserted first into the stem cells. There is another approach to extending lifespan, although piecemeal, and that is the concept of regenerative medicine. Regenerative medicine is the idea of repairing the body with stem cells and the signals to which they respond. Once we’ve extracted these signals from the genome and used them to control embryonic and adult stem cells, we will then be able to control the body‘s own growth and repair mechanisms. This opens vistas of an entirely new kind of medicine, one that doesn’t depend on our current use of surgery and potent poisonous drugs, but instead depends on cells and signals and rebuilds the body the way it was itself built. A major premise of regenerative medicine is that the body is a self-assembling system. The hopeful part of this theory is that we needn’t understand everything about how stem cells work before they can be useful to us. We know that cells talk to each other constantly through signals, a chatter upon which we’re only just beginning to eavesdrop. The cells tell each other what to do according to their kind so, for example, all the kidney cells are hearing the message ‘Keep on being a kidney cell.’ If the kidney is damaged and we put an embryonic stem cell into that kidney, that cell will receive the kidney signals broadcast all around it, turn itself into a kidney cell and repair that tissue. Embryonic stem cells are cells whose biological clock has been set to zero, so in using them for repair, we are putting baby-like tissues into an adult, and these could last a very long time. If we do that for each organ as it fails, we should have a chance of increasing longevity to a significant extent. TOP OF PAGE |
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Lori Andrews Distinguished Professor of Law Chicago-Kent College of Law Director of the Illinois Institute of Technology’s Institute for Science, Law and Technology My phone rings constantly with calls from scientists, priests and venture capitalists intrigued with the ethical issues genetic engineering raises. There have been proposals, for example, to clone the dead presidents and not only are there no laws to stop anyone from doing this, there are no laws to stop people from cloning you against your will. For example, what if Bill Gates’ barber cloned Bill Gates and then sued Bill Gates for child support? How do we deal with the policy issues of genetic engineering? We often want policies in cases where technology affects us personally. If my neighbor decides to have a baby using in vitro fertilization, that doesn’t affect me, but if she chooses to manipulate the genes in her embryo to make her baby smarter or taller, that may put my family at a competitive disadvantage, and I might want government to develop a policy that would give me an equal opportunity for my child. If you care about using genetic engineering to create cures for disease, there are other legal policies such as patent laws we will have to change to get cures. Currently, President Bush has restricted United States scientists who want to work on these technologies to the use of a limited number of cell lines. Most of the cell lines are owned by a small number of companies that stand to profit from any use of them. For example, The University of Wisconsin’s agreement with the government says that if any researcher using their stem cells comes up with a useful treatment, the University owns it. Our taxpayer dollars are subsidizing commercial research. Gene lines can now be patented, with the result that physicians who want to test for the presence of certain genes in the body have to pay the gene line’s owners to look for that gene. In the past, owning basic scientific knowledge like the sequence of a gene was unimagined because of its potential for interfering with research. This policy toward patents is restricting research and may result in America’s losing its scientific preeminence. Owners of a gene could prevent scientists from doing epidemiological studies to determine the incidence of a disease, they can exaggerate the incidence of disease associated with that gene in order to stimulate testing for the disease, and an owner can determine who gets his test based on the owner’s religious beliefs. The man who patented the breast cancer gene will not allow it to be used for prenatal testing. It is possible that if someone bought all gene patents, he could deny people the right to do any prenatal testing. Regardless of what we would like to believe, we are not going to get no-risk, total cures for any disease, despite the hopes of scientists. For the past 20 years I have sat on government funding committees where one “guaranteed” treatment proposal after another has been presented, only to fail to fulfill the hopes for it. Perhaps what we need to accompany these developing technologies is more discussion about how our values relate to the technology. A national committee like the one in Great Britain that discusses these issues and makes policy for developing technology would balance the demands for life-enhancing scientific advances with consideration of the ethical consequences of life-changing technologies. TOP OF PAGE |
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Robert P. Lanza, M.D. Vice President of Medical and Scientific Development Advanced Cell Technology Group Worcester, Massachusetts There are many human diseases caused by tissue loss or dysfunction. Parkinson’s disease and diabetes are two examples. Cloning technology may make it possible to alleviate tissue degeneration and to decrease the need for organ transplantation. Cloning begins with an egg cell whose nucleus has been removed. The egg cell is put in a petri dish together with the cell that the technician wants to clone. That unit receives an electrical charge, damaging the membrane between the two cells. They fuse, and the nucleus from the cell to be cloned is dumped into the egg cell. The nucleus starts to divide and can be used in two ways: it can be put into a surrogate mother and develop to term, creating an entire clone, or it can be kept in the lab to generate embryonic stem cells for medical purposes. A number of animals have been created using reproductive cloning: cows, cats, monkeys, goats and even early stage human embryos. What Advanced Cell Technology found in the cloning experiments it did with certain cows was that the cloning process seemed to rejuvenate the aging adult cow cells. The finding is extremely important for medicine because it implies that we can take cells from older patients and bring them back to a youthful state. It also allows us to do all sorts of genetic manipulations. The process of cloning tissues and organs for repair of human bodies would allow us to avoid the disasters of xenotransplantation, that is, transplantation of a foreign organ or tissue. If we take a pig heart and put it into a human, antibodies in the recipient’s blood will recognize the foreign molecules on that organ and destroy it. But we can take a cell from the pig and, using gene technology, knock out that immunologic trigger, then, cloning the cells in the petri dish, create a pig free of the molecular trigger. As you know, this has already been done, so the hope now is to eliminate the biggest barrier to xenotransplantation, hyper-rejection, enough to be able to control with regular immunosuppressive drugs the rejection of the transplanted organ. Cloning could also be useful in the treatment of diabetes. Extracting insulin-producing islets from diabetic patients, increasing the number of islets by cloning them with embryonic stem cells and injecting the new islets avoids the hazards of immunosuppression associated with pancreas transplants. Therapeutic cloning can be used to treat diseases of the autoimmune system such as lupus and multiple sclerosis. The new cells can be injected without the use of other drugs and can repair damaged heart tissue and joints damaged by arthritis. With tissue therapy we can grow organs in the laboratory to replace damaged ones, but the promise of this technology rests on our ability to use embryonic stem cells. Here’s where the ethical problem comes in. We have to create preimplantation embryos in order to get embryonic stem cells, so the question is whether a completely undifferentiated ball of cells smaller than the head of a pin warrants the same rights and respect as an adult or child. This isn’t an academic question. There are millions of people out there who could benefit from using technology that depends on embryonic stem cells, so the issue is a pressing one. TOP OF PAGE |
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Thomas H. Murray President, The Hastings Center Director, Center for Biomedical Ethics Case Western Reserve University School of Medicine The use of cloning for human reproductive purposes offers us the possibility of choosing a number of our children’s characteristics, such as height and intelligence. Our use of this technology of reprogenetics should be accompanied by an exploration of certain questions relating to our human values: What is the worth of the child, what is parenthood and what is a family? Our concepts of family and values underlie the answers to these questions. What are reproductive technologies for? To allow people to have children. In the United States there is a virtual lack of regulation of reproductive technology. What is the result? The process is expensive and risky. Current procedures create hyper-ovulation, resulting in an astonishing increase in multiple births. There are few good comparative data on the effectiveness of various therapies, and clinics that sell the technology are strongly motivated to paint a positive picture of their results. The dominant framework for thinking about the ethics of reproductive technologies has a technical name: procreative liberty, the freedom to make a child. The problem with the theory of procreative liberty is that it says adults should be free to use whatever means and use whatever arrangements they choose to achieve their procreative ends. They can hire someone as a surrogate, buy eggs, use prenatal testing or perinatal manipulation. Procreative liberty acknowledges a woman’s right to choose not to be a parent and the use of contraception or abortion to achieve that goal. When you decide not to have a child, there is no child, but when you decide to have a child, there’s another person to consider. When you decide to have a child, you have a family, which raises issues of values connected with that family. If you ask Americans where they find meaning in their life, they answer that they find meaning in their families. This is evidence of the value we place on families. If one of our tasks in life is to identify our most important goals, those goals might include emotional and moral development: learning to become caring, responsible human beings, learning to become good nurturers. If such development is part of what a worthy life is about, there are different ways to accomplish it, but living in a family is one of the principle ways. Families are the settings in which values best develop: love, loyalty, maturity, steadfastness. Families are the best place to develop children. As we think about the range of reproductive technologies, the question we should be asking is not just, “Is this going to happen?” but “What are families for?” Will these technologies, if given free range, bring us closer to the achievement of the values nurtured in a family or might they be distractions or even undermine the achievement of these values? We must begin by thinking about what human flourishing is and how families shape and serve human flourishing. We need to have vigorous public debate about the values we seek in families. TOP OF PAGE |
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Lee M. Silver Professor of Molecular Biology and Public & International Affairs Princeton University Reprogenetics is the result of combining reproductive technology, developed for overcoming infertility, and genetic manipulation, developed for overcoming human disease. Together they allow couples to ensure or prevent the inheritance of particular genes in their child. In many cases this technology may be used for non-medical purposes. How do people feel about reprogenetics? A poll published by Harper’s Magazine in 1997 showed that when asked, "If you had to choose one of the following, who should have the power to control the genetically linked characteristics of a child before birth?" 11% of the respondents answered, "the parents," .7% "doctors," 16% "no one," and 70% answered "God." In the same poll, the same people were told that "eventually genetic technology may allow a couple to control certain characteristics of their unborn child" and asked, "If you were expecting a child, how important would controlling the following characteristics be to you?" Eighty-four percent of respondents said they would like to control disease immunity, 64% said they would want to control the child’s intelligence, 51% the child’s sexual orientation and 19% gender. This indicates that in general, people reject controlling genetic inheritance but when given a precise use of the technology, they are in favor of using it. There are two categories of reprogenetics: genetic testing and selection of embryos and genetic engineering of embryos. Selection of embryos is happening now, usually when one or both parents are carriers of inherited disease. That technology is limited by the complexity of most traits, and current technology won’t allow parents to give their child a trait they don’t already have. Genetic engineering of embryos is not being used right now, but theoretically there are no limitations on how we can change genes. If the technology can be made safe and successful, if the perspective parents want to use it, if its intended use is to help a child, is that ethically acceptable? Reprogenetics could be used by prospective parents to increase their child’s chances for health, happiness and success in comparison with other children, but it will not be affordable to everyone. Is it ethical for those parents who can afford the technology to purchase it? Is it fair? The force of parents’ powerful desire to advantage their children combined with the reluctance of the American government to restrict individual liberty when other individuals are not directly harmed will continue to drive the development of reprogenetics in America. I believe the ethics of the questions posed here depend on your own sense of what’s important. The ethical evaluation of genetic modification depends on who controls the use of the technology, the state or the parents, and the purposes for which the technology is used, e.g., social good or individual enhancement. It is impossible to predict the future of reprogenetics, but it is likely that in America, the marketplace will determine how this technology will be used. In this country, scientific advances are dependent upon funding either from governments or from businesses that determine that there is a market for certain technologies. The potential changes we are talking about will not happen tomorrow, and it is impossible for us to know whether reprogenetics will help humankind as a whole or destroy its very meaning. What we do know is that it is people who will determine how all of these technologies will be used, so the future is in our hands. TOP OF PAGE |
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