Genetics and Human Self-Understanding
GENETICS AND HUMAN SELF-UNDERSTANDING•••
Genetics on the simplest level is the name of a class of problems of organic chemistry: how to name and describe the structure and function of the DNA that forms the core structure within the nucleus of all living cells. The particles of the molecule are arranged in a structure called the double helix, and this doubled form traces the function of the molecule and the transmission of data between generations of organisms as each is copied for replication. Scientists have come to understand and believe that genes, the smallest unit within that molecular system, direct chemical reactions that create larger proteins that drive the processes necessary for cell growth and cell death. Much remains to be discovered about how this occurs, but that it occurs—that proteins direct biological processes, and that they in turn are directed by genetic or epigenetic activity—is largely a settled question.
Why then, does the idea of genetics excite such controversy? The problem lies in what one makes of this genetic narrative, and how the epistemic task of genetics implies fundamental ontological and moral assumptions. Hence, the meaning of genetics is only partially addressed as a problem of scientific definitions. It also queries some of the most profound of issues in philosophy (such as the meaning of identity), social theory (such as the meaning of justice), and theology (such as the balance between imaginative human actions and proper human duties).
Genetics as Science and as Ontology: A Simultaneous Debate in Bioethics
Bioethics as a field grew contemporaneously and concordantly with genetics; bioethics began with speculation about the meaning of gene research (Jonson). Nothing has concerned the field of bioethics, a field largely marked by concern for the unknowable and speculative future implications of activities in the biological sciences and medicine, more profoundly than genetics. Genetics is a metaphor and a medical hope. It is at once a final cure for diseases, a prophecy for illness and for abilities, and perhaps a harbinger of troubling injustice when used as definitive of moral status. Genetic knowledge in the late twentieth century became the central way to make meaning of the single most contentious and heavily freighted problem in human self understanding, that of origins and kinship and the way that birth circumstance was or was not determinate of fate. As philosophy and theology has much to say about kinship, fate, and family, bioethics has much to say about genetic knowledge of the same issues.
There is long history of moral advice directed toward genetic science, stressing the profound dangers attendant upon the kind of knowledge that genetics presents. Genetic knowledge represents a powerful and new understanding of how basic biological processes can be expected to unfold relative to older systems of human understanding as presented in religious or moral traditions, and genetic knowledge can be destabilizing to these systems. Since the relationship between present states of being and the unknown future had, up until the late nineteenth century, been in the purview of magic, philosophy, or religion, the unease surrounding genetic knowledge is understandable—fate, behavior, and character are powerful grounds of contention in any case. Yet by the first years of the twenty-first century, the relationship between the science of genetics and the critique of this science began to be shaped by its own dynamics as well. Genetic knowledge itself began to stand in for modern scientific knowledge, for scientism, and for instrumentality. Bioethicists found a belief in genetic causation vexing, perhaps reductionist; this critique became a stable feature of the literature of bioethics. It was a hallmark of the debate: Researchers would describe new discoveries in genetic science, and bioethicists would describe the attendant dangers. This can be illustrated well in the first (1995) edition of the Encyclopedia of Bioethics, in which researchers (Whitney, Anderson and Friedman) delineate, with clear enthusiasm, the emerging science of the mapping of the human genome—at that point just begun as a project, and philosophers, (Flew, Shweder, Juengst and Walters) raise the specter of Nazis, insurance company misuse of information, "playing God," and making "designer babies."
Nearly a decade has passed since that edition, five decades from the first discoveries that lead to modern DNA research (Watson, Crick, 1953, Franklin) and three decades from the Asilomar conference on recombinant genetic methodology, in which ethical issues took center stage in genetic research (Soll and Singer, 1973.).
Despite dramatic changes in the scientific knowledge base over the last several decades of the twentieth century, and despite an emerging praxis of medical and agricultural genetics, many of the identical concerns about hubris and post-human futures are persistently raised in bioethical discussions of genetics, and little of the original choreography of the debate has altered. Why this might be the case, and why bioethicists might find genetic knowledge to be fraught with a particular sort of meaning, is the subject of this article.
Knowing and Meaning to Know
Genetic knowing long has implied a moral sense, a way in which we could come to know, utterly, and with certainty, our human selves. Thus genetic testing becomes the first issue of concern, and remains one of the most troubling ones. Genetic testing is where the process of differentiation begins, and is the most direct and immediate way that genetic knowledge inserts into the particular and individual lives of most members of society. Genetic testing leads to application as soon as it leaves the realm of the laboratory, and its rationale is only evident in application. If humans are constituted in particular and tangible physical ways, and if one comes to understand particular facts as expressing the very truth of one's being (things like gender, or size, or impulse regulation), then knowing more precisely or more clearly who one is implies that one might know more precisely what to do. One might, through knowing who one is more exactly, know the scope of possible actions. This could produce knowledge about how to live morally, how to construct the artifice of social order with compassion, wisdom, and insight. Further, the self might well be altered as humans alter other species. If humans can alter our species in the way that we can alter other parts of the natural world once thought immutable, the question emerges: how can we do so in a just and thoughtful manner?
One can argue at this juncture that it has always been the case that all science involves this sort of venture of self generation, and many have noted that genetic knowledge is a matter of more facts amassed, as opposed to a greater interpretive power (Jonson). In this argument, genetic knowledge is not unlike the new understanding of gametes that took place in the middle of the 1800s, a form of understanding of human reproduction that implicated theology as well as science. The shift from Aristotelian notions of the beginning of life to theories first developed when lenses could be ground and microscopes constructed allowed a democracy of meanings to be attached to reproduction. Large shifts in understanding occurred throughout the seventeenth, eighteenth, and nineteenth centuries. Darwinian explanations marked ontological revolutions as well as epistemic ones, disrupting and destabilizing fixed philosophical, social, and theological ways of understanding nature and moral location.
Maynard Olson argues that the understanding and interpretation of the double helix is another such leap in self understanding, and a prelude to even more potentially destabilizing—or potentially liberating—ways of organizing human societies. If humans' sense of ourselves as both free and freely choosing rests on a detachment from our bodily selves, it will be likely come to be seen as mistaken. We are, in this genomic age, as much shaped by this understanding of ourselves as genetically capacitated as we are by the understanding of ourselves as having souls and psyches.
Genetics suggests a set of ideas about the nature, goal, and purpose of human life. It suggests, then, a definition of the self relative to the human location in the phenomenological universe. Like all science, genetic science suggests a method—not only a set of facts, but a way of ordering, framing, and using the facts. Genetics—with the goal of understanding a large and complex phenomena, organism, or mechanism—seems to demand understanding, defining, and naming all the parts of the thing, knowing the smallest discreet part of the whole, and knowing how the activities of each part connect. Hence, the task is to define the parts list and the function of each part, as a way of describing the activities of the phenomena. What genetic science threatens are not only the ideal forms, but the relationships and activities of phenomena in the actual, moving, and existing world.
The search for atoms and wave particles in physics parallels the search for genes and chromosomes in biology. Genetics functions on the basic idea that pieces of the whole need to be fully understood, and that a reconstruction of both the structure and functional pathways of each event within the whole is critical to the organizing principle itself: Parts determine the whole. Further, like all knowledge, the fulcrum of genetics lies against the notion that naming and defining creates being and allows for possession: Names determine relationships. To name a thing is to define its identity, and hence to identify it as a thing that can be owned, exchanged, used, bought, and sold.
Finally, like all knowledge, genetics is also about power and control (of the unknowable future, of the unknowable body, and of the unknowable other). Genetics understands itself by disassembly, through the knowing and naming activity, done primarily by mapping in the lab and testing in the clinic. It is a critical Hellenistic notion that making is knowing and in the creation of a "working parts list" and a "manual," one can know the essence of the thing (Peters, 2002). The idea that having a parts list then assumes assembly is both what is intriguing and troubling about the meaning of genetics (Fleishacker). At the beginning of the twenty-first century, the hopes for the next logical stage—reassembly—were merely theoretical, yet the prospect of manufacture seems inevitable and troubling to many critics.
The result of such reassembly—a commodity without human connection, named as a clone or as a designer baby—haunts the field, and this specter transforms the debates about genetic testing into something far larger. It becomes a debate in which knowing which one am I? becomes a kind of knowing who could I be? In this scenario, if one creates an object rather than a human person, one could have an unjust power over the production. Hence, genetic knowledge, testing, and even basic research stands in for the clinical results of the research at its farthest reach. Meaning and mythos overcome actual science, as ethicists and society look at the next stage. The sense of the power behind the discourse has driven both the enthusiasts of genetic science and the catastrophists.
The concerns about the meaning of genetic knowledge center around five topical areas: issues of identity; issues of relationships and kinship; issues of health/illness, ability/disability; and issues of justice. Identity is at the core of reflections on human meaning. Of all the answers to this question of identity, it is perhaps the emerging research and applications of genetic information that offer a definitive response. After the human genome has been fully charted, it will be possible to answer the identity question with a set of mathematical coordinates, an identity bar code that would be distinctly individual. Genetics is, among many other things, a way to name and to describe the processes that make one distinctive and particular. An understanding of how DNA shapes the self unfolds within older contextual ideas about identity. In the words of many that describe the genetic mapping projects, knowing and naming can help us "crack the code of Life," or "tell us who we are and why we behave the way we do," or "explain our traits." The genetic explanation—not the reductionist causality of one gene making one behavior—allows an understanding that genes, proteins, and the environment complexly and intricately signal one another and hence "write" the narrative of human action. If genes and proteins and signals allow for differing levels of biological products in our bodies, and if we react with pleasure, anxiety, or disease to these products, then the horizon of possibilities against which all action is taken is in part suggested by the limits of our creaturely, molecular selves.
The idea that inheritable characteristics determine family ties is an old notion, but the idea that membership in a class of people is similarly determined is an idea that gained ground only in the eighteenth century, when colonial expansion raised the problem of inclusion of others into categories of science. Membership, and hence moral status and social privilege, became linked not to narratives of place, dress, or speech, but rather to something more tangible: the phenotype of persons. This physicality of how one knew what was valid, the linking of truth with the observation of physical facticity, transformed both the science and the polity of modernity.
Identity is paradoxical for Americans. It is a country premised on the idea that who you were does not matter; who your parents were was not the determinant factor in this new land. For many, the radical change in heritage would be the interruption of centuries of closed familial possibilities, and the possibilities of shifting identity that urban and industrial concentrations required. Yet the mutable, spontaneous and creative re-imagining of the self has collided with another narrative, that of a deeply pre-organized and highly structured internal code, a code which, for better or for worse, is passed between generations. Hence, Americans hold two things in tension—that we are free of all previous and unchosen commitments, and that we are increasingly to be understood as having our fate scripted into our very cells.
The Remembrance of History
Paradoxically, what grounds concerns about the speculative future of science is the past—what is called "the shadow of history" (Juengst). Given the emergence of bioethics directly after the trials of the Nazi doctors at Nuremberg, it is not surprising that there is hardly any account of modern genetics that does not begin with a detailed account of the classic tragic and paradigmatic slippery slope of bioethics—the passage of Germany's most imminent scientists from physiologic metrics, to behavioral genetics, to eugenics, mass murder, and torture based on Aryan racial science. The death camps of the Shoah were particularly horrific in their painstaking record on the "science experiments" on the imprisoned Jewish, gypsy, and homosexual subjects, conducted under the rubric of exploring the question of human difference understood as racialized genetic difference.
In the United States, most intellectuals of the Progressive Era held the assumption that breeding was linked to human behavior in the straightforward way that it was linked to animal behavior. Few doubted Francis Galton's extrapolation of Darwin's understanding of hereditary traits, and the widespread acceptance of physical and mental characteristics as hereditary—and thus subject to social engineering—was a feature of arguments from sources as disparate as American socialists and industrialist Henry Ford (Kevles and Hood). The measuring and mapping of the human body was driven by a need to account for conditions of vast social difference, emerging class distinctions made newly apparent by the industrial revolution and colonialism, and to justify such social inequalities with seemingly natural and logical categories (Duster; Gilman). Marking the physical differences between individuals and groups implied a ranking of worth and of deviance; it further implied that danger could be logically eliminated from a world cleansed and purified.
Genetics understood as eugenics could be used as the justifying modern ideology both to encourage "good" (i.e., healthy, large, white, socially obedient, Aryan) births, and to eliminate "sickly" or "weak" (mentally or physically disabled) births and people. While it is clear that the ideas of inheritance, family resemblance, and hereditary have ancient textual and historical power, this marriage of science and tradition clearly amplified the ideology. Hence, fears of the widespread misuse of genetics and its linkage to a "science out of control" were largely formulated in the period 1845 to 1945. This period, and the eugenic sterilizations that peaked in the 1920s and 1930s in the American context (finally ending only in 1973 with Valerie N. v. State of California), delineates the concern: since genetics was code for the worst excesses of state discrimination, is not the past inevitable prologue?
Issues of Justice
The idea of difference implies hierarchy. Genetic testing is conducted to find and define the metric of difference from an agreed-upon norm. Critics of genetic testing raise two problems: first, that the idea of testing can be used unfairly as a basis for allocation of scarce goods, such as admission to competitive institutions or privileged social locations (jobs, professional schools, university); second, the very idea of a norm is an invalid one, and one that creates and reifies social hierarchies that destabilize democracy.
One new bioethical argument has been raised by disability advocates. They argue that genetic tests are an imperfect way of understanding humanity. Genetic testing, which notes allelic variation, can point to difference but is not sensitive to how the differences will express in any one human body, nor any one human circumstance or exposure. Further, genetic testing can alert one to differences but cannot alter the genome of the person tested. Used in the context of a prenatal test, each parent must decide if the pregnancy should proceed or if the different genetic code and its attendant disease will create a child with a disability so profound that such a child would be better off having never lived. Then, argue advocates for the disabled, if such a child's life is considered too burdensome, will such a judgment be fatally linked to disabled persons already born? Since at this point only the person and not the genetic disease can be eliminated, will this have implications for the moral status of the disabled community?
A second troubling aspect of a widening use of genetic knowledge lies at the other end of the possible curve of genetic endowment and the notion of the normal. If researchers could intervene to alter disease-causing genes, might science not go further to enhance traits labeled as desirable? Justice issues arise not only in the classic distributive sense—wealthy individuals and classes of individuals will have a unique access to the first uses of enhancements—but also in the deeper sense that genetic science might disrupt the social compact by introducing such different abilities.
The final issue of justice asks a different genre of question: Will increased genetic knowledge and use of genetic information and interpretation allow for healthcare that is more or less just? There are at least two possible responses. First, as noted above, enhancement or differential access to genetics could deepen differences, particularly if such changes are heritable, allowing a persistent benefit across multiple generations. But the very quality of genetics that allows for wide applicability may well mean that genetic methods could be both widely available and less beholden. Chronic conditions that could be cured would mean that certain types of drug therapies would not be needed. Justice, argue Alan Buchanan, Daniel Brock, and Norman Daniels (2000), becomes a matter of making just choices rather than adjudicating and adjusting the unfairness of a genetic lottery. Many critical aspects of the problem of justice are not different in meaning from other types of sophisticated, highly technological medical interventions such as organ transplants, chemotherapy, or implantable cardioversion devices, which allow for similarly vast differences between persons, countries, and healthcare system membership. Genetic medicine can seem to be paradoxically more unjust precisely because it has the potential to become far more widespread in application, and because of its heritable character.
Issues of Relationships and Kinship
Linked to the issue of identity are the issues of family, kinship, and citizenship. Increasingly, genetic identity is used as a way of describing these sorts of relationships. Families in earlier historical periods defined the boundaries of love and relationship. With each new genetic advance from in vitro fertilization to cloning, the question is raised about whether bonds of love and family would be severed, and in some extreme accounts, the question of whether both genders would be needed at all, as genetic materials that carry identity could be disaggregated and reassembled at will, without regard to family bonds.
Genetic science made significant progress in the years around the turn of the twenty-first century. The Human Genome Project, which provoked concern in many bioethicists, had been largely completed by 2003, and many more genetic tests are available and even commonplace in pre-diagnostic use. Further, the field of population genetics has emerged as a new force in medicine, anthropology, and popular culture via genealogy. Genes and genetic testing have become a feature not only of the clinical world, but of the world in which families search for roots to their past history. The search for roots has long been a part of establishing authenticity, and in the twentieth century this search for roots became a popular staple of fiction and culture, with genetic testing kits to find ancestry available through the Internet. For many groups, searches for genealogy were linked to the larger project in which cultures that had been destroyed or threatened were remembered and preserved. Such endeavors are not without scientific grounding: genetic science has noted for years that predictable mutation rates allow for dating when populations reached bottlenecks, encountered plagues, etc. The Y chromosome is slow to change, and single nucleotide polymorphisms (SNPs) can be noted and interpreted and used as markers in human populations. Since each male inherits one Y chromosome from his father, the Y SNP model haplotypes can be and have been used to trace genetic origins.
Specific populations that have attempted to confirm their narratives of origin with genetic testing include the Melungians and the Lemba.
The Melungians are a group of related families in loosely-linked communities in the mountains of Appalachia, called a tri-racial isolate by social scientists of the 1930s who wrote the first ethnographic studies to describe them. The Melungians, though, have embraced an origin story that they are really lost Turkish sailors; they have enlisted the resources of the University of Virginia's genetics department to further these claims, and are supported by the Turkish government.
The South African tribe of Bantus called the Lemba, like other tribes in Africa, has claimed ownership of a narrative of Jewish heritage. The Lemba observe a practice curiously distinct from surrounding Muslim or African native traditions: they observe Sabbath, they have menstrual rituals, and they have a particular priestly caste—the Bubas—that hold significantly more leadership. In the case of the Lemba, DNA mapping tests have been preformed, and the distinctive Cohen haplotype occurs in the same frequency as it does in Ashkenazi Jewish populations; this is very suggestive of a valid claim of Jewish origin.
The question raised by these cases involves the idea of identity: After the genetic tests are completed, will the facts of genetics trump the narratives of inclusion? Will the genetic information disrupt the story and weaken the claim of inclusion, or will it strengthen it?
Identity and Authenticity
This new use of genetic testing has raised a series of intriguing questions. If genetics is what makes one a "real" Native American or a "real" Jew, then is the DNA self the authentic self? Increasingly, DNA testing does establish criminal identity, parentage, and paternity. At stake in this discourse is how one defines and creates identity. In reflecting on this problem, the work of Charles Taylor is useful. Taylor notes that modernity threatens an authentic sense of identity in several ways.
For Taylor, the sense of self is diminished by "three malaises." First is an increasing individualism, the idea that the conscience and the consciousness of the self is shaped by our attachment to freedom understood as autonomy from hierarchy, order, and authority. The self is understood less as a person within a social structure but far more narrowly, and this may well "flatten and narrow our lives, making them poorer in meaning, and less concerned with others or society." Genetic knowledge, in this view, portends an ever greater threat in this direction—it is not just the individual person but her genes that seem to direct the will. Taylor's second malaise is the cluster of fears about the use of instrumental reason, technology, and efficiency as both explanatory and justifying. For Taylor, who understands the usefulness and libratory possibility of technology, the critique is still important; he argues that devices, technological solutions, and a cost-benefit strategy will also "flatten" the moral self. Taylor's final concern is that a focus on the value of an atomized self, in a technological world driven primarily by instrumental reason, produces a world with less active citizenship and a diminished moral sense. If one understands that the condition of the world is such that it stands in need of healing and repair, and that medical genetics might well play a critical role in understanding and addressing many disease states, then one can turn to Taylor: "We are embodied agents, living in dialogical conditions, inhabiting time in a specially human way, that is making sense of our lives as a story that connects the past from which we have come to our future projects. That means if we are to properly treat a human being, we have to respect this embodied, dialogical, temporal nature" (p. 106).
For Taylor, the struggle to find the meaning of the authentic self is never fully completed or realized. He is not thinking here primarily of the problem of phenome to genome, but his model allows reflection on a similar set of issues.
Genetic identity is vexed by a concern that science is leading toward a post-evolutionary state, understood by bioinformatics professor Pierre Baldi as the result of an evolution and relationality that could be entirely planned on our collective behalf. If genetic codes and hence knowledge of the gene-protein-phenotype relationship is finite, it all potentially can be known. "[S]ooner rather than later we will know all the letters and genes in the human genomes, all the protein families, as well as their structures and functions … in many ways we are reaching the end of our evolutionary odyssey … All the things that have been created and molded by evolution stand a chance of being seriously challenged" (Baldi, 2003). Baldi's thoughtful optimism may be premature, as others have argued for a more iterative ethics, one that worries step-by-step about the actual thing one can do in science, rather than the problems created by a speculative future scenario (Olsen). Yet meaning is made through one's sense of journey and direction as much as by one's attention to the drama. One understands and makes meaning of genetic knowledge through attention to the past, and to the future, as well as to the present.
Philosopher Bernard Williams considers the novel by Nigel Dennis called Cards of Identity, in which "an organization, called the 'Identity Club' engages in making people over, giving them a new past and a new character—a new identity." Williams notes that the key feature in the process was the choice of a new name. For Williams, what matters for identity is the relationship between the many, or the type, and the one, or the particular. Existence can be discontinuous, and identity is not to be confused with role. One's role or social identity is constructed, always shared: "[I]ndeed it is particularly important that it is shared and an insistence on such an identity, (say, Native American) is an insistence on the way that it is shared, by 'social processes'." Williams argues that such an identity, if embraced, is "an aid to living." Here, Williams notes that social identity is understood to be causative: "thought to explain or underlie a lot of the individual's activities, emotions, reactions and in general, life. And such an identity, particularly, if chosen is a search for a sort of a homecoming." Williams argues:
It is also typical of such identities that they are not just analogous to the classifications of nature, but closely related to nature … they seek to affirm and origin.… it is typical in such cases that they have some sense that they are not just opting for one group among others, but … finding something that was there; or coming home—one kind of obedience to Nietzsche's splendid instruction "become what you are." In such a case, what I have come to lies outside my will, something that is given, although I must choose to take it up. (p. 10)
Identity is political, and it is, for Williams, linked to the project of the Enlightenment itself—a project of understanding and discovery of what was there all the time.
Life in the Imagined Future
Can one, with the human genome mapped, the "parts list" on ready file—not only for humans, but for an increasing range of our favorite or feared animals, plants, and viruses—go beyond the familiar critiques? What does genetic knowledge mean for us now, that we in fact have lived through the calamitous times so feared by critics in the 1990s? What does it mean to think genetically? Is it different than how a philosopher would think in 1955, 1925, 1825, or 1155? What part of this is knowing that human genes make a series of proteins that control pathways of more protein-protein chemical reactions, allowing this author to create and the reader to read these words and allowing them to be seen and stored by other proteins in the neurons? Does it become merely another metaphor, akin to, for example, the culturally ubiquitous metaphor of the body that is formed of clay by a Master Potter's hand? Or does, it, as was predicted in 1995, "make us rethink many of our moral concepts and theories."
In part, moral concepts and theories have been revised with the acquisition of genetic knowledge. Parents and physicians are willing to understand and act on behalf of an embryo on the basis of genetic information alone: they terminate, complete, or choose a particular pregnancy based on prenatal genetic diagnosis. Courts and police find completely credible the notion that samples of DNA at a crime scene can prove that a particular suspect was there and use this to arrest and convict one person, or to free others.
But remarkably, given the level of concern, moral concepts appear to be remarkably resilient. While it is true that new reproductive techniques did change the variety of ways that pregnancies could be begun, the years around the turn of the twenty-first century also saw significant increases in adoption, including interracial and international adoptions, and the evidence that genetic material mattered more than other familial bonds was conflicted. Some of the advanced reproductive technology stressed genetic ties, but others (as in the use of surrogate eggs from young women implanted in older women, or the use of sperm banks) stressed gestational or non-genetic bonds as increasingly important. The last half of the twentieth century was notable both for a deepening sense of ourselves as driven by genetic coding, and for a deepening sense of fundamentalist religious fervor, spirituality, and attention to alternative medicine—quite an unexpected paradox. Genetic rhetoric in the period just after the mapping of the human genome, rather than accentuating perceived racialized divisions, steadily and officially proclaimed our unity as a remarkably coherent human species with highly conserved genetic similarities to other organisms. It has became commonplace to understand that genetic codes matter a great deal, at the same time that it has become commonplace to add that the complexities of environment and epigenetic factors, chaos theory, and randomness also play significant roles.
History, even very recent history, can be held to up to the prognostic ability of bioethicists who reflect on the future and predict its course. How has bioethics as a field done, in this way, against the unfolding of the knowledge only speculated about in the 1990s? To be sure, few if any of the predicted catastrophic or euphoric scenarios have occurred in any empirical way.
Is it prudent to have concerns about the potential consequences of genetic knowledge? To be sure. It has been fears and not faith that have driven the thoughtful design of many of bioethical regulations. Fearsome events may well await us, but the trends have not been in that direction, as a review of the world since the 1990s teaches. To the contrary, the importance of families has not waned, nor have kindred and kind been neglected. Children, as families have chosen to have fewer children overall, remain highly valued, and the bond between generations seems entirely unaffected at least by genetic testing, although there has been increased vigilance in all matters genetic. A deeper sense of faith in the ethical and moral integrity of research and in the core duties of medical science may well be in order.
By 2003, there were new laws, and far more robust ones, that protect privacy and insurance misuse; there also existed national oversight bodies in most industrialized countries, and bodies at the international, national, state, and non-governmental organization (NGO) levels, to regulate or at least publicly examine genetic policies and techniques. Bioethics centers and ethics debate in general flourished at the beginning of the twenty-first century, despite new and pivotal research in genetics taking center stage in many science policy debates. The President of the United States, George W. Bush, made human embryonic stem cells the subject of his first public address, and the U.S. Congress debated the science and ethics of genetic policies, especially cloning and genetic modification. The ethical discourse about meaning and agency moved from the academic margins to the center of the debate. Decades after James Watson, Francis Crick, Rosalind Franklin, and Linus Pauling moved the chemistry that enabled the basic theory of genetics towards the modern intellectual project of genetic sequencing, and decades after computational and structural biology coalesced this sequence into a credible account of how human persons develop, few would claim a victory for an unreflective position in the debates about the influence of nature versus nurture.
The human genome, our nature, is clearly understood as responsive and interactive with the environment, adaptive yet constrained. Few can credibly deny the reality of the genetic-protein explanation of the physical world. It is, for now, the best account of the phenomenological terrain, and it is the text and tool that facilitates the exploration of the details and the variable of our human selves. Will we reach unbreachable ethical boundaries in this terrain? Will the "moral harm" that might exist become too dangerous to contemplate, and will the existence of moral harms out-weigh moral duties to simply know and name as much about the world as we can? Are there horizons beyond which we cannot venture, and entities we ought not to know, mysteries that allow humanity to exist? Or have we a human duty to our human curiosity? Can one argue for a duty to heal and in the pursuit of the goal of healing, allow for all knowledge, and all pursuit, no matter where it might lead? Such worrisome questions remain, despite both increased regulatory efforts and a series of gravely sobering and stochastic human events. An article such as this can only hope to highlight competing moral appeals as they emerge in the literature of bioethics and in the literature of science—it cannot hope to solve the quandaries, and humility in prognostication about our genetic future, for good or for ill, would be a wise and prudent path. Genetic knowledge places us in a position of unprecedented choices—not yet about our final telos, but in a very real way, in a position to understand both the gravity and the temptations of the road we travel there.
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Cohen, Cynthia B., ed. 1999. New Ways of Making Babies: The Case of Egg Donation. Bloomington: Indiana University Press.
Dennis, Carina; Gallagher, Richard; and Watson, James. 2002. The Human Genome. Hampshire, Eng.: Palgrave Macmillan.
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Gilman, Sander. 2003. Jewish Frontiers: Essays on Bodies, Histories, and Identities. New York: Palgrave Macmillan.
Jonsen, Albert R. 2003. The Birth of Bioethics. New York: Oxford University Press.
Juengst, Eric T. 1990. "The NIH 'Points to Consider' and the Limits of Human Gene Therapy." Human Gene Therapy 1(4): 425–433.
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Olson, Maynard. 2003. Speech for the Fred Hutchinson Cancer Research Center in Seattle, WA.
Peters, Ted. 2003. Playing God?: Genetic Determinism & Human Freedom, 2nd edition, Forward by Francis Collins. New York and London: Routledge.
Taylor, Charles. 1992. The Ethics of Authenticity. Cambridge, MA: Harvard University Press.
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Williams, Bernard. 2002. Truth and Truthfulness: An Essay in Genealogy. Princeton, NJ: Princeton University Press.
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