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Living under the Fallen Sky
Science and religion meet naturally, if uneasily, in healing.
Consider the world. Consider the pain in the world, its darkness. Consider the passion in the world, consider its light. What is a heaven for, by which I mean, what is religion for in modernity? What talk of God, what theology is possible if you love science, if you count on it, if you, as I do, study in the world of basic medical research?
It is the nature of democracies to believe in the possibilities of every human person: for justice, for beauty, for argument, and for wisdom. It is the very nature of freedom to imagine capacities and choices beyond what is now possible. Yet our capacities for these technologies and our support for the intellectual and moral project of basic science are often tempered by our sense that the alteration of human physical,intellectual, and moral limits will change our world in complex and unpredictable ways. How ought we to balance our reach and our grasp in basic science? What are our duties and responsibilities toward the present and the future? How can we frame the moral arguments about science and human limits?
Fall 2001: I am in the Harvard lab of Len Zon, and I am here to see about his fish. Over coffee, he explains why he is so interested in this new idea, human embryonic stem cells. It is because of a hunch he has, not about tissue transplants, but about how they are immortal, how they are like cancer cells in that they grow quickly into tough clusters, turning over and over into replicas, yet not taking on a cell fate, pure growth. He reminds me that this is a way to understand much of human disease at the cellular level—too much growth, too early a death. It is why we metaphorize things—industrialization, ideologies—and call them cancerous. We go to his lab, and it is a matter of codes and locked doors, because, he explains, of the animal rights activists who might break in and free the lab's animals, which are thousands and thousands of tiny zebra fish darting around in boxy plastic tanks each the size of a shoebox.
Zebra fish are nearly transparent when they are developing—you can clearly see phenotypes—and they, of course, have stem cells, and they breed quickly, so that generations can be studied within weeks. You can count and mark, if you have the patience, cell by cell. He taps the side of one, and he is a tall guy, so it is on a row above my head. "These little guys," he says, "they will help us cure cancer." Zon is an optimistic man, and he is, as it turns out, right about cancer and stem cells, although it will take years in dozens of quiet, busy labs like this one to begin to make sense of how, still, we are so far away, the distance between the gaze, the attention, the count of each transparent cell to the theory; still more years to the human tests; still more years to the yearning ones in the Children's Hospital beds, many floors above the lab, where families look out the windows at the rolled-steel gray sky of Boston. To love science is to love unseen work, to love even failures, lucky error or false starts, to see what might yet be—the world to come.
Winter 2004: To live as a watcher of science, a teacher of bioethics is like living in Chicago in February. As I write the snow is falling, and the world is still waiting, and skeptics know the long wait until spring and the Cubs' games. But when one picks up children after work, something subtle has changed in the road—the light has shifted just a bit, its first slant toward summer. The news in health care is grim in winter 2004. There is avian flu, and cholera, mad cows, SARS, and ricin; whole health care systems in Africa stagger under the burden of AIDS and malaria; resistant TB lurks in east Russia; and here at home, 43 million Americans lack decent access to health care. But the announcement is made by a South Korean team that they have made a stem cell line of human cloned cells, and it is another kind of sudden, subtle, shift of light. In a lab in Korea, 242 human eggs donated by 16 women volunteers are coaxed through an intricate, delicate process toward becoming blastocysts, and of 20 one is turned into the first successful human stem cell line, or so it is thought.
The achievement seems significant, for it appears in one of the leading peer-reviewed journals, Science, and because it would have made good on one of the first necessities of stem cell therapeutics: that tissue could be made that is a direct genetic match for patients in need of transplants. It is only one more step on the very slow, iterative road of genetic medicine, only one step closer toward a tantalizing goal, on a path by which each tentative step matters a great deal. They tell the news media—huge numbers of reporters from all over the world—that they have cloned one embryo, made one set of human stem cells. It is only one line, in one lab, in a small country that Americans rarely discuss. Yet it is the first story on every major network, and on the front page of every urban newspaper in the world.
And when the entire experiment turns out to have been faked with Photoshop, the informed consent documents turn out to have been faked as well, and nearly every possible ethical and scientific guideline has been seen to have been violated, that is front-page news, too.
What were we witnessing this time? We are watching medicine, which increasingly means a broad political and social debate about biotech, occurring all over the world. That is why it seemed so credible, of course. Yet, despite all of this fakery, perhaps the single largest hoax in science, stem cell research went on trying to actually do what had been claimed. Because for all of the promise of stem cell therapies, the major obstacle for serious use will be how to make stem cell tissues match up with sick or injured people. As with any sort of human transplant, the big problem with stem cells is that the tissue or organ will be swiftly and painfully rejected—and cloned tissue might just make a nearly perfect match, so it is one of several possible roads toward this goal. We are years away from any human use, but this first, serious, peer-reviewed experiment would have been critical proof of concept, and with more research, and more careful study, we might have been heading more quickly toward fundamental changes in how we treat human health. It was also important because it opened the door to an avenue of basic research: how to study how human diseases are expressed at the very earliest stages.
And the case was important because of its impact on our sense of the new. Science is now global—pluralistic views contend for meaning, and many religions are fully engaged in the fray. But even the faked science was curiously important in that it showed a careful consensus, built governmentally, a controversy that could be mediated, a support of and pride in work publicly, a clarity about noncommercial interest, with conflict of interest and appearance of conflict avoided. And, finally, the case seemed coherent, scientific, and humble.
The reaction to the Koreans, when it was thought they had been successful, was swift: a Vatican statement called the work "murder," "akin to Nazi Science." Others, including White House spokesmen and the then chair of the President's Council on Bioethics, Leon Kass, called it "frankly immoral" and "the beginning of the slippery slope." There was a noticeable repositioning of political forces over both the applications of science (and fears of the future) and over basic science itself (forbidden knowledge). Two weeks later, the term of one of only three scientists and one of the strongest supporters of stem cell research on the President's Council on Bioethics, Elizabeth Blackburn, was not renewed, and another supporter of that research, the theologian William May, was allowed to leave the council. They were replaced by three new members who have spoken and written about the "fundamental evil" of embryo research as the willful destruction of innocent human life—and who have raised fears that such research will lead to state-sponsored "compelled abortion" on every disabled baby. Blackburn and Janet Rowley, one of the two biologists left on the council, wrote to protest the council's report, and to decry the increasingly politicized atmosphere on the council; 174 professors of bioethics wrote to the council to object and to call for broadening the debate by including a representation of ethics and science advisers who would speak in defense of basic research.
But surely it is not just the potential in cloning that is driving the science and ethics debate. Rather, it is the fundamental understanding that the etiology of disease is best explained now not by tumors, or germs, or even the environment, but by the complexities of genetics, protein interaction, cell-signaling pathways, and events in time and space that trigger what happens within an organism. This idea—that one's fate is neither entirely in one's control nor subject to morality or desire—challenges who we believe we are and what we believe about ourselves in nature.
Our challenge—and this means each of us, scientist, citizen, congregant, critic, and enthusiast—will be how to live decently and fairly in a complex world of difficult moral choices. Can stem cell research yield therapies that could help millions who now suffer? Will it yield cures for diabetes, Parkinson's, spinal cord injury? Who can yet know? That is the thing about narratives in which one cannot turn to the back of the book. If it were able to help even some, that might be light enough in the wintering world.
The research imperative is largely driven by such haunting memories—of children with cancer, or children with diabetes, or cystic fibrosis. If you ask many of the researchers in the emerging fields of biotechnology, they will tell you stories about patients met in training, or a family member. They will tell you of the suffering of the world, and its fundamental injustice. Yet when bioethicists speak of biotechnology, we hardly begin in the brokenness of the present—we nearly always begin with an account of the future. Consider the following, from one of our most thoughtful critics, Leon Kass:
Let me begin by offering a toast to biomedical science and biotechnology: May they live and be well. And may our children and grandchildren continue to reap their ever tastier fruit—but without succumbing to their seductive promises of a perfect, better-than-human future, in which we shall be as gods, ageless and blissful.
As nearly everyone appreciates, we live near the beginning of the golden age of biotechnology. For the most part, we should be very glad that we do. . . .
Yet, not withstanding these blessings . . . we have also seen more than enough to make us anxious and concerned. For we recognize that the powers made possible by biomedical science can be used for non-therapeutic or ignoble purposes, serving ends that range from the frivolous and disquieting to the offensive and pernicious. These powers are available as instruments of bioterrorism (e.g., genetically engineered drug-resistant bacteria or drugs that obliterate memory); as agents of social control (e.g., drugs to tame rowdies or fertility-blockers for welfare recipients); and as means of trying to improve or perfect our bodies and minds and those of our children (e.g., genetically engineered super-muscles or drugs to improve memory). Anticipating possible threats to our security, freedom, and even our very humanity, many people are increasingly worried about where biotechnology may be taking us. . . . We are concerned that our society might be harmed and that we ourselves might be diminished, indeed, in ways that could undermine the highest and richest possibilities of human life.1
There is much to say about this long quotation—in providing it, I want to give Kass a fair chance for his concern to be understood. And he is not alone. Charles Rubin notes that "the cutting edge of modern science and technology has moved, in its aim, beyond the relief of man's estate to the elimination of human beings." Francis Fukayama fears that we have created a post-human future that will leave us soulless, stripped of the essential nature that makes us free. Gil Mileander is concerned that it is suffering that makes us able to be compassionate, and that the relief of suffering is only one among many competing and noble goals. Bill McKibben and Carl Elliott, speaking from a different political perspective, argue along the same lines—that in using biotechnology we risk inauthenticity.
Jürgen Habermas makes another sort of argument—one that I will call Habermas's avatar. He argues in a recent book that stem cell research and preimplantation diagnosis are troubling because they will lead to a particular sort of troubled adolescent, who has been made by a genetic engineering scheme in which dna can be altered for math genius, for example, this being done because of what he calls the "anarchic whims of consumers and clients," meaning parents.2
The avatar, then, will experience the loss of his moral agency: "The designer is the co-author of the life of another, intruding into the other's consciousness, from the interior, one could say, into the consciousness of her own autonomy." The sense of authorship and choice will be replaced by a "vertiginous awareness that, as a consequence of a genetic intervention carried out before we were born, the subjective nature we experience . . . is actually a result of the instrumentalization of a part of our nature." Habermas continues: "I am primarily concentrated on two possible consequences: first that the genetically programmed persons might no longer regard themselves as the sole authors of their own life history; and second, that they might no longer regard themselves as unconditionally equal-born persons in relationship to previous generations." After all, he quotes Hans Jonas as saying, "whose power is this—and over whom or over what? Obviously the power of those living today over those coming after them, who will be the defenseless objects of prior choices made by the planner of today. The other side of the power of today is the future bondage of the living to the dead."3
This idea, that the human future will be, can be made, transhuman, is, to be certain, also too often put forward by the researchers themselves, or by bioethicist enthusiasts. The hopes for research are rather amazing, and the strides toward a certain kind of mastery, a certain kind of certainty, are powerful ones. The classic account of a medical research breakthrough gone bad is called hyped research, and anyone close to the so-far-falteringly-few clinical trials in genetic intervention or cancer can understand how news media reports of cures can fall disappointingly short.
Scientists can add fuel to the conflagration at the margins of medicine by speaking of religion as an absurd fantasy, or dismissing all fears as Ludditism. Pharmaceutical companies can construct elaborate accounts of research that can be only a minimal advance over standard, effective, and genetic treatments, understandable from a business angle but a distortion from a purely scientific perspective, and understood as deceptive by many in the field.
What a paradox that it is on this terrain, the terrain of medical research, once the very core of how we understood ourselves as fully human, that we find the very notion of humanity challenged. What should be the response of the compassionate, humanistic physician toward the new biotechnological possibilities? Is the pursuit of healing perilously close to a tragic misunderstanding of our role, leading us into a post-human future we cannot control? How can the duties and responsibilities of medicine act as our guide in this complex future, and how can the freedom of research be balanced with the core ethics of medicine itself?
We pay much tribute to science, for it often bears our best hopes, and our deepest trepidations. Any serious exploration of the history of science and its meaning must be frank about its mutability, its shifting knowledge base. What a paradox that the search for the actual description of how the world works is so fraught with remarkable unknowability. Molecular genetics, and nanotechnology in particular, are developments of an idea at the heart of science: that the world is real, and, at the atomic level, perfect, constructed, finally actual, even if we cannot fully understand it, even if it cannot be fully interpreted. Medical research aims at far more than basic research. Like bioethics, great medical science actually has both a descriptive and a normative component—it implies a direction and a meaning and a goal.
In this way, I argue that the free inquiry of research science can be understood as a sort of free speech. It is protected by the larger social polity, and it has to be responsive to the larger civic discourse, and to the meaning of the moral gesture of medicine. If medicine's future lies in genetics knowledge, how will such terrain shape our view of the self? If medicine's future lies in transgression of boundaries understood as natural, how will we reconstruct a robust sense of morality and of a connection to the narrative past?
We live in the world as we find it, but medicine is, in a sense, about the world as we imagine it could be. The task of the next century in medicine will be a complex and difficult freedom, for with emerging, transformative powers will come serious and vexing challenges. Creating a duty-based response in research as well as in medicine will be needed if the calling at the heart of medicine continues to guide the work of the physician.
Just as we stand on the edge of a rigorous new understanding of genomics, molecular biology, and regenerative medicine, with the first actual clinical trials being suggested, bioethics has turned its attention to the fear of a future entirely out of our control. At the moment in which human health is constantly improving, when life span is longer than at any point in history, and when the emerging health problem in industrialized countries is not starvation but obesity, we are beset with fear. A fearful polity and a fearful response to new biotechnology are commonplace. What is at stake when moral philosophers write about a "post-human future" and seek to persuade science policymakers to stop basic research as a genre of forbidden knowledge? What is attendant on the slippery slope argument, and why does such language resonate so clearly with classic language of eschatology?
The fear that is so clearly expressed by many in bioethics is a fear of a future end-time, in which what has come is a dystopia, but an odd one. Let us return to Kass:
The last and most seductive of these disquieting prospects—the use of biotechnical powers to pursue "perfection," both of body and of mind—is perhaps the most neglected topic in public and professional bioethics. Yet it is . . . the deepest source of public anxiety about biotechnology, represented in the concern about "man playing God," or about the Brave New World, or a "post-human future." It raises the weightiest questions of bioethics, touching on the ends and goals of the biomedical enterprise . . . and the intrinsic threat of dehumanization . . . not the old crude power to kill the creature made in God's image, but the new science-based power to remake him after our own fantasies.4
Because these are such serious charges, seduction being such a theme, let me respond seriously, and to a large extent historically, for the objections to medical research might be described in historical terms, noting that the features of classic tension between modernity and traditionalism exist in the debate.
The objections of the critics are largely based on six arguments:
- Human bodies are inviolate from the moment of conception. Our moral status, which is to say our bodies and, increasingly, our DNA is our self, and to touch or alter even an early embryo in the first moment after that DNA is assembled is impermissible. Our dignity requires this intactness. This moral status means most of all that destroying human embryos is always wrong, but also that any deliberate approach to the DNA is wrong as well.
- Nature—human nature and the nature of the green and living world—is fixed, for it has borders that cannot be broached without violation. Nature is normative, and morally good, if left free, and it will express itself in a primal harmony that our use, and our machines, threatens.
- Suffering is the main thing that defines our species' being. Suffering and its noble acceptance is the great teacher of our need and of our love. Without suffering, we would become soulless. Death defines us, and this technology is intended to—and might—lead to immortality.
- Slopes are slippery—if we use a technology for good, there will be no way to stop it from being used for larger and progressively more evil or more trivial purposes.
- This finitude, this death, is what leads each of us to our aspirations. And it is these "fine aspirations acted upon [that] is itself the core of happiness."5 Real happiness is not being really happy, but is achieving one's fine aspirations.
- The mix of marketplace and medicine is troubling, and the very success implied by genetic medicine—its widespread applications—should alert us to its danger.
Not everyone makes every claim; some emerge politically from the left, some from the right. I will make two claims about these arguments. First, all of them are more than trivially correct, and any sensible person could agree with many of these statements. The trouble begins with the extremity when they are taken to their logical conclusions. (Yes, slopes are slippery, but they are not impossibly slippery.) Second, all of these are profoundly religious statements. They are statements of faith, worldview, and eschatology, not of moral argument. As such, they will not—cannot—be entirely agreed upon in a pluralistic democracy. Like many faith claims in our world, they tell us, in a sense, that the end is near, unless. . . .
First, is the sky really falling? Is the world about to be fundamentally changed by genetic medicine? This is, I believe, the fundamental problem and it is a folie à deux, shared by both extreme sides in the debate. Both sides actually believe that the future is a certainty, that we are at an eschatological moment in human history. The contemporary literature about biotechnology reflects a rather touching sense that the future can be named, known, and spectacular. But it cannot be fully known. There are two logical problems in thinking about the future. First, is it empirically possible—will we actually, and in a widespread way, ever use cloning, and will cloning ever really have an impact on people's reproductive practices? Take in vitro fertilization—it is widely used, to be sure, but hardly a threat to the family or to the practice of erotic sexuality. Are we seriously debating the good or evil of immortality or agelessness as if this was an actual concern?
Second, we cannot know the social impact of technologies that will occur against a changing horizon of other temporal and technological changes. It was not long ago that living as a healthy 80-year-old was unusual, and this has in one generation swiftly become obtainable for many, or that the defining suffering for all of human history, infectious disease, could be addressed in nearly every case—but there is no empirical evidence that we are now living to old age without our souls.
May we make the world? On some level, how can we not? What would it mean to turn away from learning how to sequence mammalian genomes? To cease drug development if a drug might be used for evil intent?
This needs, perhaps, to be a religious matter, as is all sort of discussion about the end of time. For many Jews, the sky fell long ago, when the Temple of Jerusalem was destroyed. The idea of the sacred canopy, in the sense that Peter Berger intends it, has surely fallen in pieces after the Holocaust and lies like shattered glass everywhere. People walk around a world that is difficult, not Eden. The snake is just a snake, nature is morally neutral, and people are intended to create by picking up the shattered pieces, the jigsaw puzzle of the fallen sky, trying to figure it out. From a Christian perspective, as Jean Bethke Elshtein reminds us, the tree at the center of the moral universe is the cross, but for the Jewish philosopher, it is the Torah, law, justice, the pact of solidarity and witness that is Etz Chaim, the tree of life at the center of the lost world.
Utopia, the "world to come," is, in a sense, one that we must make. In the words of the Jewish philosopher Levinas, utopia is that one can be chosen to be called upon by the needs of the other people. It is no accident that Levinas argues that the free person is one who "before all loans, has debts," meaning that duties are prior to rights and are specific (we owe something to the neighbor, we are responsible), chosen and unique, and in this responsibility we want peace, justice, and reason—this is the way to think about the meaning of being human. If one thinks that the world, as it is, is morally correct, and that change is not only dangerous but a seduction, a destabilizing one, threatening to alter our species' being, that it must be, in this account, protected, singular, a thing entirely belonging to us, then the sort of thing that stem cell research represents is terrifying—because it deconstructs the world into pieces and suggests that it can be reimagined, and reimagined largely for the need of the other. In a sense, it is a close account of the moral gesture of medicine.
I would argue that it is not suffering that defines us, it is healing—the moral gesture of healing is the precise nonanimal thing. It is not our pain, which I share with every mouse; it is the fact that in the medical school in which we teach ethics, we teach doctors and nurses to work in blood and feces and bone for the need of the other alone, that the dying man and the laboring woman command our complete attention. It is not achieving my fine aspiration that makes me human—or even reading the Iliad; it is my willingness to sacrifice my very breath to resuscitate if need be, or to wash the back of the indignant stranger if that is whom I am given to care for, that allows me to become human. Without our duties, and without our love, we are just words on paper.
Is this a unique time in human history? Is our world-making ability unprecedented? Hardly. At many times in human history, the sense that large forces clash over the power to control the world is apparent. One critical time is the ninth through the twelfth centuries, but the conflict appears in the Renaissance and in early modernity as well. Let us turn to the medieval period, and to the work of medievalists. Jonathon Cohen and Richard Landis and others have argued that mysticism, millennialism, and calls for a return to natural order often emerge just at the moment that science forces new relationships of knowledge and power. Landis, who studies millennialism, notes the comparison between our period and the ninth century. We can see that the literature of opposition to science is largely based on resonant tropes, tropes particularly but not uniquely shaped in the early medieval period.
Hence the debates, even when given force by secular argument, are deeply driven by faith commitments and arguments of religion. Examples include: a fear about the role of women and a call for the return of women to the inner, private world of the family; a surety that suffering is both unavoidable and redemptive, that our suffering will make us pure; a fundamentalism in faith, and a taking on of symbols of origin, so as to be more authentic—origin costumes, a sense of living in an "end time"; a claim that plagues, especially plagues driven by external persons, endanger the polity. There is a fear of contagion and intrusion. There is an aesthetic that emphasizes blood, a feature of art of the medieval period.
We are faced, globally, with a deep yearning for the past—for the present can be a terribly uncertain place. There is a sense that medieval tropes are true or essential ones—that we live in a spirit-haunted world, with an affection for clarity in good and evil. Old prejudices reemerge, and fundamentalism is a powerful force politically and religiously. In such a period, there is a struggle with phenomenological knowledge—science, observation, empirical wisdom, and received knowledge from religious leaders. In the West, such fears are often the subject of intellectual discourse, but merely discourse, but in the developing world in 2003 and 2004 such theories had dramatic consequences. In Nigeria, polio vaccine was refused in fear that it would cause female sterility, and in Zimbabwe, grain was refused in a famine in fear of genetic engineering. In the United States, the President's Bioethics Advisory Committee raised questions based on a notion that an instinctual moral repugnance, or the deep-seated knowledge of faiths, ought to guide moral discernment. But what are we to think of moral repugnance when it means that babies are not given polio vaccinations, or women are not allowed to read, or 5-year-olds go to bed malnourished? In bioethics, the basic Heideggerian ideas—that truth can be recovered from a preliteral past, that authenticity is formulated by one strong "I," and that suffering and death are the fulcrum points of essential humanity—have made a strong argument.
But rationality, science, and what came to be understood as modernity have always been in collision with such ideas. Modernity is uneasy with received knowledge, and seeks to learn from a process of trial and error, of open knowledge and phenomenology—in which the observation of the world, its description, its failure to comply with theory has long been noted. Science performs with the idea of progressive optimism, with its intervention to change fate, with an affection for machines, and with an attention to units of time.
Different faith traditions—Buddhist, Hindu, Sikh, Muslim, and Jewish as well as Christian sensibilities—will need to be considered now, and in most of these, the duty to heal the sick and the need for free scientific inquiry will be the primary considerations in this work. For many whose religion now prohibits any use of the early embryo, no matter how it is created, much of this research will be impermissible. But others will argue that this opens the door to a critical research direction. Each member of the clergy and each lawmaker must think: how do we balance the many competing moral appeals?
Many agree fully with the arguments I listed above, and they argue that the future is something that should worry us. The fear of technology, clones, or catastrophe plots directly with the general sense of fear that permeates our lives. In fact, bioethicists have turned to giving advice about new subjects in biology: neuroscience, and its impact on happiness and memory, for example. In so many matters of medical research—in neuroscience, nanotechnology—the technology is already deeply and persistently feared, each with its own set of science fiction literature, movies of terrible futures, and plucky natives who resist the evil scientists.
In large part, what is at stake is a favorite topic in bioethics: autonomy and the threats to it. The vertigo, the disgust, the repulsion, the repugnance are the signs of an intrinsic reaction to the violation of nature, argue Habermas and Kass. However, Kenneth Seeskin reminds us that in Jewish law, the autonomy must be by definition the coming to accept the quality of the gifts of God's Laws: "We do not possess autonomy the way we possess a circulatory system. It is something we have to strive for. The crux of autonomy is that no obligation can result from a purely external revelation, thus for Maimonides, an internal revelation is also necessary—one must be the law. Be the author of the law. Kant does not mean by autonomy what existentials mean by it, not, in a Buberian sense, the freedom to engage in a spiritual search for themselves. Kant means that a person has to will the moral law for its own sake and be the author of the law in the way I am the author of the constitution."
In other words, Habermas's avatar cannot lose his autonomy because his choice to be a musician is less possible, or that his sphere of possible action is shaped by the love of another. The problem with the idea that autonomy is "endless possibility" or an "open future" is that it is a theological blunder on another score—it makes the error of idolatry, that human life is unlimited or independent, when the opposite is surely the case: we are all dependent on those beloved dead who shaped us, and we are all obligated to shape our dependents as well.
The conversation about biotechnology repeats over and over—Hans Jonas first wrote about genetic alterations more than 40 years ago—and has become a reflexive sort of conversation, about nature and who will tell its story, and this is newly more intense, as if the content of one another's inner life of faith actually mattered. The conversation about nature, our nature, is curiously not about what surrounds us now, here, in this world; it is about the world to come, and our fears that in our own, blundering way, the sort of technology that biotechnology is could undo us as humans.
I do not know what such dislocation means. I do know that all of our lives as humans are lived tight-roping across the great darkness of the abyss in our sparkly clothes. You leap, arms out, hoping for the best.
When I read the opposition to biotech, I think of a number of cases. But consider the case of the family that came to ask if it was permissible to perform an oophorectomy on their twin daughters, removing their ovaries so that they will not ovulate and menstruate. The twins had Lesch-Nyhan syndrome, a genetic disorder of the neurological system of a particularly dreadful type: it causes people with the disease to claw and bite themselves, hit and swear at others, and fall into self-destructive rages. The family had kept the babies at home, and had wrapped them in special padding that the mother had sewn herself, and they had padded the garage and the walls of a play area so the twins could go outside when they were calm enough. The parents kept them at home, for they understood the twins as a blessing and a burden, their blessing and their burden, which was just as well, because the alternative was an understaffed public institution dependent on county funding. But now the twins were 12 and had begun to menstruate, and when they did, when they saw the blood coming out of their bodies, it made them desperate and they tore at themselves. Sometimes they had to be held all night. This is where religion and science meet, that place.
Illness cuts like a knife across families, and in the United States, where health care is also a business in which healing, for all of our rhetoric, must still be bought, illness is not only an occasion for nobility; it is also an occasion of desperation. I have come to think that the worry that "we are playing God," can only be made by people who do not actually believe in God, or perhaps think of God in a Hellenistic sort of way, gods that slip around and trick up the universe. What heaven is for, if you believe in God, a difficult thing even for an academic theologian to say, is not to be "for" me, in the way that we understand the world is for us. Heaven, I will claim, is entirely larger, heteronomously, precisely not in our rational, lawmaking beings, the realization of the entirety of otherness, otherwise than beingness—like suddenly, here, thinking not of the language between us, but of the vertiginous sense of being a being on a planet, which is teeming from every Darwinian riverbank, green cells and plastic labs and rusty railroad track and all, falling back into vast black space, tracing a path, we hope, optimistically, around a tiny sun, anonymous in the universe. To have faith, to actually believe in God, is to understand that this vertigo, which Jürgen Habermas so fears, is the actual condition of the creature, and what religion's passion is toward is the duty toward one another despite that, not its absence.
A heaven is for the doubters, the unfinished, the hesitaters. We have fallen into the hard work of birth and loss. What we fear is our failure and our grief is limitless. We fear that the unknowabilty of the universe is limitless, and we feel that our human capacity for both curiosity and cunning might be unlimited too. For a modern to know this is to see, suddenly, our actual plight. And yet—heaven exceeds even our reach and even our fear.
"A man's reach should exceed his grasp, or what's a heaven for?" This phrase, which I assumed to be my mother's, who said it with stubborn cheer when I failed physics, is not about science after all; it is part of the long lament of an old man about his lost life, his failure at perfection in art, and his failure at love. It was written by Robert Browning as a monologue by the painter Andrea del Sarto. When I reread it for this paper, I found something else there, that faith is for the ordinal limits we set in place:
There's the bell clinking from the chapel-top;
That length of convent-wall across the way
Holds the trees safer, huddled more inside;
The last monk leaves the garden; days decrease,
And autumn grows, autumn in everything.
Eh? the whole seems to fall into a shape
As if I saw alike my work and self
And all that I was born to be and do,
A twilight-piece. Love, we are in God's hand.
How strange now, looks the life he makes us lead;
So free we seem, so fettered fast we are!
I remember that a turn to the classic texts of the Jewish tradition reclaims a praxis of duty to "the world to come," and this often means the world made for our children. "The heavens belong to the Lord, but the earth belongs to the children of men," not to us, but to our children, and in these classic texts, there is a suggestion that a far more optimistic future, a far more complex and contingent future, and a future that is still profoundly human awaits us if we make it. It is, in the terms of Levinas, "the adventure of possible holiness," who reminds us to ask not "am I righteous?" but "is it righteous to be?"
- Leon R. Kass, "Ageless Bodies, Happy Souls: Biotechnology and the Pursuit of Perfection," The New Atlantis, Spring 2003, p. 9.
- Jürgen Habermas, The Future of Human Nature (Polity Press, 2003), 48.
- Ibid., 31-32, 48.
- Kass, "Agelss Bodies, Happy Souls," 10.
- President's Council on Bioethics, Beyond Therapy: Biotechnology and the Pursuit of Happiness, (HarperPerennial, 2003), 299; or http://bioethics.georgetown.edu/pcbe/reports/beyondtherapy/.
Laurie Zoloth is the director of the Center for Bioethics, Science and Society and professor of medical ethics and umanities at Northwestern University's Feinberg School of Medicine. She is also professor of religion and a member of the Jewish studies faculty at Northwestern, and the director of the university's Brady Program in Leadership and Ethics at Weinberg College of Arts and Sciences.