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Fall 2000  |
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Genome Ethics James Watson was the first director of the National Center for Genome Research from 19851992. He received the Nobel Prize in 1962 for the discovery of the DNA double-helix. This article is adapted from his forthcoming book, A Passion for DNA (Oxford University Press, 2000). New YorkThe mapping of the human genome has presented unprecedented ethical choices to human society. What are the issues and what are the choices? I see the genome map as having two major purposes. Clearly, the first is the ability it offers to medicine to vastly speed up the rate at which important disease-causing genes can be found. Most genetically predisposed diseases are not rare conditions limited to small numbers of families; they encompass a wide spectrum of common diseases like diabetes, arteriosclerosis, Alzheimers disease and many cancers. In the past, they have not been included among genetic diseases since the time of onset and severity have strong environmental components. For example, whether an individual comes down with late-onset diabetes is a function not only of his or her genetic constitution but also of dietary history. Likewise, a combination of genes and diet determines an individuals probability of having a heart attack. And whether a woman comes down with breast cancer depends not only on the genes she inherits from her parents, but also upon her later exposure to cancer-causing agents that may be present in her food and in her environment. Equally important, the human genome is our ultimate blueprint providing the instructions for the normal development and functioning of the human body. That we are human beings and not chimpanzees is not due in any sense to our nurturing but to our natures, that is, our genes. This does not mean that we have highly different sets of genes. In fact, both sets of some 100,000 genes carry out roughly the same biochemical tasks. But the 5 million years of evolution that has separated us from the chimps have led to significant divergencies from chimps as to the exact times at which some human genes function, as well as the rates at which they produce their respective protein products. Successive changes in certain key genes have led to the retention of many juvenile chimp features into adult human life. For example, the shape of our adult brain is that of the baby chimp brain with our general lack of body hair resembling the situation of baby ape. As the Human Genome Project moves to completion, we will have the power to understand the essential genetic features that make us human. A key, though obviously not immediately ascertainable, objective is the set of instructions that led to the development of those human brain features which give us the capacity for our written and spoken languages. Opposition to mapping the genome has arisen out of fears concerning the ethical, legal and social consequences of precise human genetic information. In particular, worries have been expressed that we would be generating new forms of discrimination in which individuals, genetically predisposed to serious diseases, would be unable to obtain or hold jobs as well as obtain life and health insurance. The question of how to protect genetic privacy is clearly central to these concerns. Moreover, there are anxieties as to whether we as human beings will be able to cope psychologically with the ever-increasing knowledge about our genes. And how soon will it be before we are able to give our citizens the genetic education needed for them to make informed choices as to what information they want and even the consequences of using or not using these facts? To try to begin to address these problems, when the Human Genome Project was initiated within the United States, we made the decision to create a specific new program to consider the ethical, legal and social issues (ELSI) of the Genome Project. At its start in 1989, we devoted 3 percent of our genome monies to such issues, with now 5 percent of such funds going to these ELSI programs. Complicating the ELSI agenda has been the increasingly obvious fact that different genetic diseases present quite different spectra of ethical, legal and social dilemmas. Handling the complexities arising from cystic fibrosis, whose victims now can live into their 30s if not longer, is bound to be different from our approaches to diseases like Tay-Sachs, whose victims live in almost perpetual agony during their brief one to two years of life. Only the state of California has passed any law aiming to ban genetic-based discrimination by health and life insurance companies. And nobody has specifically come up with regulations or laws protecting the privacy of individual genetic records. Even when appropriate satisfactory laws and regulations are in place, there will still be many dilemmas that cannot easily be handled by these means. What responsibility, for example, do individuals have to learn about their genetic makeups prior to their parenting of children? In the future will we be regarded as morally neglectful when we knowingly permit the birth of children with severe genetic defects? And do such victims later have legal recourse against their parents who have taken no action to help prevent their coming into the world with few opportunities of living a life without pain and emotional suffering? GENETIC DESTINY | Those who think this way have to have the counter arguments that if we try to control the genetic destiny of our children, we are in effect eugenicists following in the dreadful footsteps of the Nazis, who used genetic arguments when they used gas chambers to kill some 250,000 already sterilized inhabitants of their pre-World War II mental institutions. While early in the 20th century eugenics had almost the ring of a prospective movement attracting the support of many prominent Americans, the horrors of these later Nazi aspects have to make us fear that eugenic arguments might again in the future be used to promote the elimination of supposed genetically unfit political philosophies or ethnic groups. Such worries come not only from minority groups who fear for their futures, but also, in particular, from many Germans whose revulsion of their own history leads them to oppose any aspect of genetic engineering, believing the technologies so developed provide a slippery slope for rekindling of Nazi-type eugenics actions. Equally strong opposition to programs aimed at preventing the birth of severely genetically impaired children comes from individuals who believe that all human life is a reflection of Gods existence and should be cherished and supported with all the resources at human disposal. Such individuals believe that genetically impaired fetuses have as much right to exist as those destined for healthy, productive lives. But such arguments present no validity to those of us who see no evidence for the sanctity of life, believing instead that human as well as all other forms of life are the products not of Gods hand but of an evolutionary process operating under the Darwinian principles of natural selection. This is not to say that humans do not have rights. They do, but they have not come from God but instead from social contracts among humans who realize that human societies must operate under rules that allow for stability and predictability in day-to-day existence. Foremost among these rules is the strict prohibition in virtually all societies against the killing of a fellow human being unless necessary self-defense is involved. Without this rule, our lives as functioning humans would be greatly diminished with no one able to count on the continued availability of those we love and depend upon. In contrast, the termination of a genetically-damaged fetus should not diminish the future lives of those individuals into whose world it would otherwise enter. In fact, the prevailing emotion must largely be one of relief of not being called to give love and support to an infant who never can have an existence whose eventual successes you can anticipate and share. AGONY AND RELIGION | Thus, I can see only unnecessary agony from laws that use the force of arbitrary religious revelations to impose the birth of genetically sick infants upon parents who would much prefer to terminate such pregnancies, hoping that their next conception leads to a healthy infant. Using the name of God to let unnecessary personal tragedies occur is bound to upset not only those who follow less dogmatic guidelines for life but also many members of those religious groups whose leaders proclaim the absolute sanctity of all human life. These latter people are bound to ask themselves whether the words of God, as then interpreted, are more important than the health of their children or those of their friends. In the long term, it is inevitable that those authorities who ask their followers to harm themselves in the name of God will increasingly find themselves isolated with their moral pronouncements regarded as hollow and to be ignored. Nonetheless we would not be surprised by increasing opposition to the Human Genome Project, which is seen as the most visible symbol of the evolutionary biology/genetics-based approach to human existence. But because the medical objectives of the Genome Project cannot easily be faulted, those who fear its implications will emphasize that its reductionist approach to human existence fails to acknowledge the overriding importance of the spiritual aspect of human existence, which they will argue is much more important than our genes in determining whether we are successes or failures in our lives. Under that argument, we would be making better use of our monies in trying to improve the economic and moral environments of humans as opposed to the finding of genes that opponents believe will only marginally affect our health and social behavior. THE UNHEALTHY FETUS | With time, however, the truth must emerge that monies so spent have effectively no chance of rolling back the fundamental tragedies that come from genetic disease. So, over the next several decades we shall witness an ever-growing consensus that humans have the right to terminate the lives of genetically unhealthy fetuses. But there remains the question as to who should make the decisions that lead to the termination of a pregnancy. Under no circumstances should these choices be assigned to the state, because even in our more homogeneous cultures, there exists wide divergency as to what form of future human life we have to encourage. Instead such decisions are best left solely in the hands of the prospective mother and father (if he effectively plays this parental role). Such unregulated freedom clearly opens up possibilities for irresponsible genetic choices that only can harm all concerned. But we should not expect perfect results in handling genetic dilemmas any more than we can expect them from other aspects of human life. And we will have reason to hope that our genetic choices will improve as general knowledge of the consequences of bad throws of the genetic dice become better appreciated. Clearly we must see that genetics assumes a much more prominent place in our educational curricula. Equally important, the appropriate genetic-screening procedures must become widely available to all our citizens regardless of their economic and social status. At the same time, we must always be aware that the human society will only come to the genetics way of thinking haltingly. Even many of the firmest supporters of genetic science will worry at times that we may be moving too fast in assuming the roles that in the past we have assigned to the gods. Only they could predict the future as well as have the power to change our future fates from bad to good or from good to bad. Thus today we have some of those same powers. Clearly this is a situation that is bound to make many people apprehensive, fearing we will misuse our powers by helping create immobile, genetically stratified societies that do not offer the prospect of hope and dignity for all their citizens. In so moving through genetics to what we hope will be better times for human life, we must proceed with caution and much humility. back to index |
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