From our food and medicine to our sexuality and emotions, the avalanche of new findings in genetics requires us to rethink our views about what it means to be human, to form social bonds, and to live in society. Focusing attention on both the opportunities and the challenges this situation presents, the Institute for Society and Genetics aims to make these possibilities explicit and to help work towards a society that understands, discusses, and makes informed decisions about issues in human genetics.
The more we learn about the relation between genes and behavior the more we appreciate the complexity and plasticity of these relations. There is no longer any possibility of separating out nature and nurture as two opposed determinants of who we are. For that reason, the Center takes as its intellectual focus the idea of co-evolution?of society and genetics shaping each other in a dynamic interrelationship. This orientation follows naturally from the Human Genome Project, which has focused attention on two major concerns. First are the ethical and legal issues arising from knowledge of the human genome and from associated research and technology. Second is the fact that the genetic basis of human life far exceeds mere gene sequences. Instead, understanding genetics requires a sophisticated view of complex interactions of multiple genes, gene expression and their social context. In fact, both concerns draw attention to the iterative, coevolutionary nature of the scholarship integrating society and genetics.
A first level of co-evolution involves the social structuring of genetic research and technological development along with the lives of those affected by them. Research and development typically occur in universities and corporations, laboratories and production facilities. They are structured spatially and temporally, involve hierarchies of responsibility and work, and develop modes of discourse that interrelate their form and content. We need to understand how this socially structured milieu is related to the knowledge and the technologies being produced within it and its relationship to the larger society-all of us-served by those products, whether well or badly.
On another level are the genes themselves. From an evolutionary perspective, the human genome is inherently social; it has co-evolved with language, tools, and the domestication of plants and animals. Originally unable to tolerate lactose, for example, many of us descended from members of herding societies now carry a genetic adaptation that allows us to drink cow’s milk. Co-evolutionary forces have contributed to our capacity to live as individuals in complex societies. These forces may even help explain such things as the tendency to respond violently to insults in some cultures, to honor informal contracts, or to establish close relations with animals and pets. The Center wants to be in a position to engage creatively with possibilities for “culture” that would derive from such avenues of new research.
A rather different level of co-evolution reflects the process of gene expression in individuals over the course of their lifespan in particular environments. For example, the present epidemic of diabetes in North America and Europe may have resulted from an unfortunate expression of genetic potentials in individuals who become overweight, a condition which itself results from the socially inscribed habits of diet and exercise in developed Western nations. It has been hypothesized that the appearance of diabetes in some developing countries may be due to a metabolism that is specially adapted to cope with unpredictable food supplies, but which has deleterious outcomes when people shift to Western diets and never encounter famines. As another example, we now know that moral sentiments, such as empathy and the sense of fairness, emerge as children develop an understanding of others’ thoughts and feelings, but the moral values that people hold are a product of the societies in which they live. In fact, the future for reconsideration of venerable questions in the humanities and social sciences is wide open. Those reconsiderations will by no means obviate traditional philosophical, literary, and historical modes of investigation but will be built directly on them.
With a better understanding of all these levels of co-evolution, we will be in a better position to evaluate how we as a society are engaged at every level in the process of producing who we are and what we are becoming. Most importantly, we will be better able to judge the benefits and harms and the freedoms and inequalities that are being generated, and to make informed ethical judgments about matters of law and policy. These issues are becoming ever more pressing as genetics becomes an increasingly prominent aspect of everyday life.
The Ethics, Policy, and Law Node seeks to understand and shape the future of genetics as it affects our individual and collective health, life opportunities, welfare, and self-understandings.
The interests of this node are necessarily both descriptive and prescriptive. Scholarship in this area will both describe the likely social and policy consequences of the new genetics under present political and social circumstances and provide recommendations about how these circumstances and structures might be altered to improve those consequences. One crucial contribution of this area is to foster public conversations about the future, inform debate,and help guide decision-making at a variety of levels: individual, corporate, political, international.
It is impossible to predict precisely where advances in genetics will take us, but significant increases in predictive genetic testing and major advances in personalized medicine, as well as insights into the genetic contribution to temperament and behavior are all very likely to occur in the not too distant future. In addition, the new genetics may soon allow us to enhance certain traits in ourselves and select certain traits for our offspring. These developments evoke exciting possibilities while at the same time provoking a wide array of ethical concerns, including:
- The “geneticization” of inequality in a world where some have access to these new genetic services and others do not;
- The dangers of genetic discrimination in employment and health and life insurance, as well as the possibility that certain groups will face permanent genetic stigma or disadvantage;
- The question of whether present institutional structures within government facilitate the best outcomes for making ethical decisions about changing technology;
- The question of whether current regulation of genetic technology reflects the views of most citizens or merely those of elites;
- The question of whether governments or individuals will pay for genetic services if insurers decide it is not in their interest to do so;
- The question of whether and how family relationships and individuals’ self-understandings may be altered in the face of new genetic information and control;
- The still broader question of whether we ought to view nature as simply “raw material” to be manipulated in any way we choose, and the possible prudential and intrinsic reasons against doing so.
Because many of these concerns touch on the fundamental questions of what it is to live a good human life, individually and collectively, they invite a profound level of reflection not only among experts, but also among all the actors in a democratic polity.
These discussions draw on the philosophical and religious traditions that have historically guided us in thinking through such enduring questions, and they thereby encourage public conversations about who we are and what we value-as well as public awareness of the degree to which disagreement on some of these issues might run too deep to yield a society-wide or “consensus” view.
The Medical Genetics Node engages the professional and public communities in discussions regarding the challenges inherent in the implementation of genetic and genomic technologies in medicine, and the risks and benefits of these technologies to individuals, groups and society. With the completion of the Human Genome Project in 2003, the associated growth of genetic and genomic technologies for screening, diagnosis and intervention in the medical arena creates a compelling need to examine the existing and potential impacts of these advances.
These technologies captivate the public with the promise of genomic medicine: predictive, preventive and personalized care. This promise will be achieved by changes in the tools of medicine. The tools will include point-of-care diagnostics for rapid and effective delivery of genetic information in emergency departments and intensive care units, permitting?for example? pharamacogenomic diagnoses to prevent drug side effects. High throughput equipment will permit population-based screening for disease risks. The ethical, legal and social implications of the uses of these technologies demand our attention.
Similarly, the promise of genomic medicine will be achieved by changes in the philosophy of medical care. We will move from approaches and infrastructures that reactively follow acute presentations to constructs that more closely resemble preventive medicine and public health models. Many interventions will involve lifestyle changes, which we know will be difficult to implement and sustain.
The concerns of the Medical Genetics Node have achieved considerable visibility within the federal government. These topics have been the subject of deliberations by two advisory committees to the US Department of Health and Human Services: the Secretary’s Advisory Committee on Genetic Testing (1998-2002) and the Secretary’s Advisory Committee on Genetics, Health and Society (2002-present), both chaired by Dr. McCabe.
The Medical Genetics Node focuses on policy issues at the interface of genetic/genomic technologies and patient care. Examples of topics that would be addressed include: genetic testing, embryo selection, complex genetic disorders, and gene therapy. This node will pursues its mission by holding public symposia and providing undergraduate coursework, as well as through scholarly investigation and policy work at the local, national and international levels.
The “culture” node seeks to understand how cultural practices, meanings, and values are created and transformed as genetics and society continue to develop in a mutually constitutive relationship. Our analytic tools are primarily those of history, cultural anthropology, discourse analysis, and literary studies. Comparative methods figure prominently.
Cultures are socio-historical entities. They are also dynamical, always in the process of constructing new practices and new meanings. This characterization applies as much to what might be called the cultures that produce genetics?the communities of science and technology?as to the cultures of consumption, of testing and therapy. Thus, one of our aims is to understand how genetics as a science has come to be what it is and how it operates in evolving social contexts. When we ask “what is a gene?” or “is it localized?” the answers may well depend on whether we ask the people in a biochemical laboratory or those in a laboratory for evolutionary biology. In studying the cultural dynamics of genetics, therefore, we investigate a variety of interrelated aspects: intellectual traditions; materials, instruments, practices, and places of research; the social structuring of research; the values and goals of geneticists; and their modes of discourse.
At a much more general level, we are interested in the processes through which the meanings of basic categories are being transformed. What is a natural or biological child? What is a normal trait? How are sex and gender understood? What is property with respect to genetic material and information, whether personal property or commercial property? Similarly, what do we mean by the “social” and the “individual” when considering the genetic relations between individuals and society. Do we take an Aristotelian view, in which society is an organic unity rooted in the family and constitutive of the individual, or do we take a Hobbesian view, in which society is an aggregate of autonomous individuals (an automaton)? How are these and other assumptions about the social and the cultural inscribed in the way we talk about genetics?
It is precisely in discussing such questions that we need to develop cross-disciplinary interactions between “society and genetics” in the sense of the human sciences and the natural sciences. Most importantly, we need to know a great deal more about the complexity and the plasticity of our genetic makeup and of its relation to who we are as individual and social beings. We need to understand how mental states, social interactions, and environment are involved in the development of individual brains over the course of their lives.
In learning more about how society and genetics are inextricably related in both evolutionary and developmental terms, we may also approach from a new direction such questions as whether or not it is reasonable to speak of a “poetics of nature” (Northrup Frye), according to which, for example, metaphorical and narrative thinking would have a neuro-anatomical basis. At the outer limits of imagination, we might even be able to approach the question: what is religion? Why has it been so pervasive in the history of human cultures?
To return from such grand questions to the solid ground of present realities, the culture node is interested in mundane similarities and differences across cultures in interpretation and reception of genetic information and technologies. Even among industrial societies, differences are quite apparent with respect to genetic testing, the genetics of sexuality and gender, and genetically modified food. How are we to understand this? On a smaller scale, the sub-populations within which significant genetic anomalies reside have well-developed cultural characteristics that have both evolved in tandem with physical adaptations necessitated by the genetic traits and acted to preserve the cultural and biological separation that perpetuates the anomaly. Such groups include the Amish, the Little People (dwarfs), and others. In these cases, genetic technologies seem to be simultaneously enable and empower on the one hand and constraining and threatening on the other. We need to know a great deal more about the culture-specific configurations of understanding and action with respect to genetics.
This node is developed from the intellectual resources of the existing interdisciplinary Center for Behavior, Evolution, and Culture (BEC). BEC is designed to build on recent developments in a number of disciplines that offer exciting prospects for genuine progress in the human sciences. From evolutionary anthropology and psychology come a rich and increasingly sophisticated body of theory and data for understanding human nature and how it affects culture and society. At the same time, growing interest in behavioral (as opposed to rational) choice models, laboratory experimentation, and evolutionary game theory in economics and political science establishes a natural connection between these disciplines and evolutionary ideas about human nature. Finally, new work integrating psychology, culture, and neurobiology has begun to explore how experience, emotion, and social environment are integrated in the brain.
Human nature is the collection of psychological mechanisms typically shared by members of the human species that give rise to human behavior. Understanding evolution helps to illuminate human nature because evolutionary processes forged the brain, endocrine system, and other components of the human body that regulate our behavior. An evolutionary approach does not imply that behavior is ‘genetically determined’, or that learning and culture are unimportant. Behavioral differences among people living in different times and places are mainly the product of facultative adjustments made by these psychological mechanisms, designed to be flexible in response to particular social and environmental conditions. Understanding the co-evolutionary processes that shape human nature is useful precisely because it helps us understand why humans respond in different ways to different conditions.
Many disciplines contribute to our understanding of how human nature evolved. Since the late 1960s, biologists and anthropologists have developed a rich quantitative theory of how natural selection shapes behavior. Although this is an active area of research, we now have a fairly good understanding of how natural selection molds important behaviors like cooperation, parental investment, communication, and mate choice. To apply this body of theory to questions about human evolution, we need to know something about the environment and subsistence economy of Pleistocene hominids. Three subdisciplines within anthropology provide insights about our origins. Paleoanthropologists reconstruct the behavior and subsistence strategies of early hominids through the study of fossils and associated artifacts. Primatologists study extant nonhuman primates and generate data that can be used to construct models of the earliest transition from ape to hominid and to illuminate continuities and discontinuities between the behavior of nonhuman primates and humans. Human behavioral ecologists, who study contemporary small scale societies, provide data that can be used to develop models for later stages of human evolution. This work is broadly encompassed within the label of “evolutionary anthropology”.
Scholars from several disciplines make use of hypotheses that flow from this work on human origins to understand the behavior and psychology of contemporary humans. Developments in the fields of economics and political science have generated vital connections to evolutionary anthropology and evolutionary psychology. Recently, many economists and political scientists have become dissatisfied with the rational actor model. A burgeoning body of experimental work has convinced many economists and political scientists that cognitive limitations and biases play crucial roles in human decision making. Social and cognitive psychologists have recently begun to probe the neural basis of emotion, decision-making, and behavior. And a group of scholars seeks to link psychology to culture and neuroanatomy, completing the integration of a full set of complementary approaches to human behavior that were previously uncoordinated and unconnected.
The Center for Behavior, Evolution, and Culture overlaps with the mission of the Institute for Society and Genetics in its analysis of the co-evolutionary relationship between evolutionary processes, culture, and human behavior.