|Bioethics and Medical
Genetic Essentialism and the Discursive Subject
ABSTRACT: Today, biology is instrumental in the epistemological restructuring of the human sciences. This biology, however, does not signify the body itself, but a metaphorical, linguistic construction of the self around which many aspects of contemporary life are becoming organized. The central metaphor of ones biology is ones genes, and ones genes are seen as the essence of the person. For complex historical, political and cultural reasons, the human genome is increasingly equated with the essence of humanness. But, not only are genetic definitions of humanness, personality and identity the product of a historical discourse, the self they seek to define is a construct to begin with, arising from an essentialist epistemology, and is historically situated itself. Scientists who are involved in human genetics and the human genome project are confronted with this epistemological reconstruction of the self in unique ways, since they find themselves in the roles of the knowers and the known. Any definition of the human self will simultaneously affect the object of their research and their own agency. The issues about moral-agency-of-life scientists that need to be considered in this context can fruitfully be discussed from one postmodernist perspective. Drawing on Foucauldian analysis, Susan Hekman reminds us that no one is ever offered only one discourse. We are self-creating subjects who refuse to be scripted, and create our self out of the many discourses that are available. I will employ aspects of her theory of the discursive subject, and recent perspectives arising from post-colonial science studies, to develop a twofold strategy for transformation in molecular biology.
Coming to live in a new country offers the unique opportunity to look at life from a profoundly different vantage-point. So, during my first two years as a scientist in the United States Ive often found myself reflecting on how societies differ in fundamental ways in their basic orientation toward life. Many experiences and impressions during this time have dramatically increased my awareness how much all bodies of knowledge about the ways the world works and the way the world, and we ourselves, are need to be understood as local knowledge systems. The concept of local knowledge systems has been developed in post-colonial studies of science, and has been applied in assertions that indigenous, i.e., non-western, and western ways of knowing are both local in the sense that both are culture-dependent and neither has a claim to universality. (1)
From that one could conclude that western science at least functions as a more or less monolithic enterprise. However, although western science as a whole is based on a shared methodology and epistemology, distinct preoccupations of the cultures in different regions of the western world exert powerful influences over the construction of scientific discourses. In the United States, there appears to be a strong need in middle class culture to define oneself through ones biology. This biology however does not signify the body itself, but a metaphorical, linguistic construction of the self around which many aspects of contemporary life are becoming organized. (2) The central metaphor of ones biology is ones genes, and ones genes are seen as the essence of the person. For complex historical, political and cultural reasons, the human genome is increasingly equated with the essence of human-ness. Coming from New Zealand, this definition of identity through a genetically oriented biological discourse is anything but self-evident, in fact, it seems deeply culturally determined. Within the scope of this paper, I will not attempt to identify what drives the need for this view of the self, but would like to stress the importance of seeking answers to this question. It seems to me to be a central concern in any critique of the contemporary gene cult(ure) in American society. The growth of a biotechnological economy and the promotion of matching societal attitudes are obviously contributing to this phenomenon, but they alone do not explain the deep resonance a genetically defined construction of human-ness appears to invoke in peoples psyches.
Genetic essentialism is dependent upon one particular belief fundamental to western culture. This is the belief that understanding can be gained by reducing an object of knowledge to its essence. A belief in the existence of a true essence, a core of Truth, permeates all of our intellectual traditions, including our search for self-knowledge. We build our construction of identity, our true selves on an essentialist premise. Thus, an essentialist conception of the self is the central organizing principle of psychology and moral philosophy. For example, we take for granted that liberation narratives follow a metaphorical journey toward "self"-actualization, where the person finds a true self that alone can express his or her moral voice and agency. If asked to conceive of the possible non-existence of such a core transcendental, untouched by experience, chance events, social pressures, or personal choice we are conditioned to experience the fear of a terrifying loss. It is by this conception of the self in purely essentialist and individualistic terms that the European-North American cultures are set apart from the rest of the world. Non-western cultures, the Maori of New Zealand, for example, view the self in markedly non-individualistic terms; a persons identity is determined predominantly by his or her relationship to the larger social group. (3)
In our own tradition, identity is almost always connected with rationality and the mind; i. e., the brain, and ultimately genes, within a more recent framework. But, not only are genetic definitions of human-ness, personality and identity the product of a historical discourse, the autonomous rational self they seek to define is a construct to begin with, arising from an essentialist epistemology, and is historically situated itself. This conception of the self embodies the ideal of the Northern European male belonging to the privileged classes during the Enlightenment. However, it has persisted to this day, and the professional roles scientists are expected to play are defined in terms of Enlightenment views of the autonomous transcendental self. Scientific credibility depends on developing a professional persona that matches these ideas. Moral philosophy in general, but also theories of scientific ethics, would traditionally only grant moral agency on those terms. Over the last three to four decades, this orthodox definition of scientific agency has been radically called into question from many quarters. I will argue that scientists ought not to feel threatened by challenges to these narrow conceptions of the scientist. They themselves have much to gain from a radical critique of this particular construction of agency and creativity.
The central point of the argument presented here is the contemporary two-tiered conception of the western self which, when teased apart, reveals itself as a genetic interpretation superimposed over an immutable disembodied essence that is rooted deep within our culture. Scientists who are involved in human genetics and the human genome project are confronted with this epistemological reconstruction of the self in unique ways since they find themselves in the roles of the knowers and the known. Any definition of the human self will simultaneously affect the object of their research and their own agency. Donna Haraway asserts that "issues of agency permeate practices of representation Who, exactly, in the Human Genome Project represents whom?" (4)
A critique of genetic essentialism and a strategy for transformation
An essentialist understanding of the self raises ethical issues related to the definition of human subjects in genetic terms on the one hand and the moral agency of scientists on the other. It is obvious that the meaning society attaches to human genetics influences personal expectations, institutional practices, and social policies now, and may increasingly do so in the future. (5) Therefore, as agents sharing in this redefinition of the human self with other cultural agents, scientists need to make ethical choices about the definitions they will support and those they will oppose. However, entering into this kind of discourse is unfamiliar territory for many scientists, and is often even seen to lie outside their professional role. An orthodox view of scientific agency, centered on a disembodied mind outside of social discourse, does not support such involvement. Effective participation may require a reevaluation of the models of agency that are available to scientists.
Let us consider the issues raised in relation to the moral agency of scientists first. In fundamental ways, any kind of representation is linguistically constructed; we can only know something about the world and about ourselves through language. At the most basic level, the level of primary data representation, design decisions about genome databases determine what uses can be made of the data what can be compared with what. Further interpretation of the data and the dissemination of this information also depend crucially on the medium of language. On a societal scale, science and culture continuously create and re-create each other through language. This traffic of ideas, images, metaphors and theories about nature and human nature is bidirectional. It is at this junction point that wider conceptual frameworks, often only implicit in the language tools employed, exert their constraints by enabling certain representations but not others. In this way, cognitive metaphors as "culturally inherited and linguistically reinforced concepts" (6) play a tremendously important role in the ongoing transformation of our views of reality and of ourselves. To illustrate this, let us consider how, throughout history, the construction of nature has drawn heavily on culturally held beliefs about women. Francis Bacon saw nature as a woman whose veil was to be torn away and who was to be tortured put on the rack to make her reveal her secrets. Today, Gaia, intended to represent the feminine principle in nature, has become a familiar metaphor in the culture at large and has been adopted by some scientists as the organizing framework for their research. (7) The purpose of these examples is not to judge the cognitive metaphors themselves but to consider how these contrasting metaphorical constructions of nature facilitate widely divergent science practices. To name but a few further examples, science also borrows metaphors from culture to describe evolution as a Malthusian struggle for existence, (8) the cell as a factory, (9) and the fertilization of the egg by a sperm cell as a drama of romantic courtship. (10) In turn, the wider culture has adopted metaphors from science that describe a person as a readout of the genome, as little more than the sum of his or her genes. Furthermore, the mind is often metaphorically seen as a computer program, and although unimaginably more complicated, akin to a program running on a serial computer. Following the logic of such metaphors, the mind, and a culture-dependent construct like intelligence, can then ultimately be reduced to genes as well. These essentialist metaphors circulate widely between academic disciplines and have come to exert a strong influence on the humanities. In bioethics, genetic essentialism remains unquestioned in itself at times, and ethical issues arising from human genetics and the Human Genome Project are discussed as if what these metaphors imply was true. In the media and popular science books, these assumptions have become commonplace.
Scientists occupy a critical position in this flow of ideas and metaphors from the wider culture to science and vice versa. Their agency is constituted by participation in both scientific and cultural discourses; they are transmitters of meaning-making images, theories and metaphors in both directions. Therefore, scientists as moral agents carry some responsibility for the language they use, and the representations of the world and human nature they are creating. From this arise issues about an ethics of metaphors in science. The issues about moral agency of life scientists that need to be considered in this context can fruitfully be discussed from a perspective of postmodernism. Drawing on Foucauldian analysis, Susan Hekman reminds us that no one is ever offered only one discourse. We are self-creating subjects who refuse to be scripted, and create our self out of the many discourses that are available to us:
On Foucault's account, this self-creation is accomplished through a kind of discursive mix. At any given time we find ourselves confronted with an array of discourses of subjectivity, scripts that we are expected to follow. We can accept the script that is written for us or, alternatively, piece together a different script from other discourses that are extant in our particular circumstances. It is important to note that this concept of subjectivity does not involve an appeal to a core, or essential, self. It is not a matter of 'finding' our true, authentic self. Rather, we employ the tools (or scripts) available to us in our situation. Furthermore, our application of these tools is a creative act; it can even be an act of resistance. (11)
We are not pre-determined subjects, with our identity and values fixed prior to our participation in any discourse. We construct our sense of 'self' as we participate in discourses of many kinds. The individual scientist is not determined by the discourses in which she or he participates. Rather, scientists participate in, and can influence, a number of different discourses through which they (have responsibility to) choose what sort of subjectivity they will express. We express moral agency as we decide what sort of subjects we are, how we will position ourselves in history, what social and political projects we commit ourselves to, what practices of power we will participate in and on what terms, and where we will offer resistance to the discourses that would construct our subjectivity.
To address the issues raised in relation to the genetic redefinition of humans, we need to ask ourselves: who or rather, what is the human to be represented by the Human Genome Project? Donna Haraway has described this human thus:
Most fundamentally, the human genome projects produce entities of a different ontological kind than flesh-and-blood organisms, "natural races", or any other sort of "normal" organic being. the human genome projects produce ontologically specific things called databases as objects of knowledge and practice. The human to be represented, then, has a particular kind of totality, or species being, as well as a specific kind of individuality. At whatever level of individuality or collectivity, from a single gene region extracted from one sample through the whole species genome, this human is itself an information structure... (12)
In other words, this data structure is a construct of abstract human-ness, without a body, without a gender, without a history, and without personal and collective narratives. It does not have a culture, and it does not have a voice. This electronically configured human is an a-cultural program. And in this very construction it is deeply culturally determined we find ourselves confronted with a universal human, constructed by science as practiced in North America at the close of the 20th century. This version of human unity in diversity is not liberatory but deeply oppressive. To achieve such a vision in a positive sense, culture cannot be separated from biology. Moving toward this vision requires the respect and protection of all human diversity that is to be found in the cultures and narratives of different peoples, and not in their DNA. All versions of the human story, all human meaning-making, would need to be heard in all their different voices.
A New Zealand perspective
In what follows I will draw on my experiences as a New Zealander, a citizen of a bicultural society. Living in a bicultural society intrinsically undercuts universal knowledge claims and facilitates the recognition that we need to take an active part in choosing which scripts we follow. Sandra Harding comments that multicultural and bicultural feminists "show how much communities and individuals have had to learn to negotiate between unequally powerful, conflicting cultures. They have not been permitted the dangerous luxury of assuming that one and only one conceptual framework can provide all the answers in order to survive and flourish. Cognitive dissonance is for them an uncomfortable but necessary and valuable resource for negotiating daily life." (13)
Politically mandated biculturalism in New Zealand seeks to enhance and support different voices, different but equal agents, and to address unequal power relations. New Zealands founding document is the Treaty of Waitangi which defines relations between Maori, the indigenous people of New Zealand, and pakeha, the British colonists, their descendants, and people of European descent in general, as a partnership. The concept of partnership ought to be the foundation of all aspects of New Zealand society. Partnership should also extend to the relationship between the two distinct knowledge systems of New Zealand, those of the Maori and of the pakeha. Although this dialog has not been entered into by pakeha scientists in the past, some progress is being made now. Signs of change were present at two recent conferences, for example: A beginning dialog between Maori, Pacific Islanders and pakeha scientists and philosophers at a national conference of the New Zealand Health Research Council in 1995; (14) and recent presentations and discussions at the 2nd national conference on women and science in 1996 (15) that strongly challenged the claims to exclusivity by western science practices. In this process of change currently underway in New Zealand, Eurocentric models of knowledge seeking are required to enter into a dialog with indigenous ways of knowing.
In no area of science is the need for this dialog more keenly felt than in the field of human genetics. Maori culture understands the gene in ways radically different from western science. For Maori, the gene is genealogy. Aroha Meads writing highlights these differences very clearly:
A physical gene is imbued with a life spirit handed down from the ancestors, contributed to by each successive generation, and passed on to future generations. Maori have two terms to describe a human gene, both of which are interlaced with a broader reality than western scientific definitions. The first is ira tangata, which is the actual word for a gene and translates as life spirit of mortals. The second term is whakapapa, which means to set layer upon layer. It also means genealogy and is the word most commonly used by Maori to conceptualize genes and DNA. (16)
Whakapapa is an immensely rich concept, it encompasses the physical heritage of the ancestors, but also the cultural values and beliefs, languages, histories, spirituality and relationship to the land of Maori. It is a relational, non-essentialist concept.
Whakapapa setting layer upon layer in all its dimensions reminds us what we are in danger of losing by genetic reconstructions of our humanity we are in danger of losing our agency in genetic reconfigurations. We become a-cultural programs with no place to stand, no place to act from. Genetic essentialism reduces us to a disembodied, uprooted abstraction that is utterly dispossessed of moral agency, and human creativity. Agency and creativity depend on the particular and the embodied, the lived experience and the lived history; it depends on whakapapa.
I have argued that the choice of the scripts we follow as scientists, the metaphors and models we adopt, are ethical choices. As a pakeha New Zealand scientist, I choose to engage in a dialog with this concept of whakapapa, a rich and multidimensional sense of being human. This choice invites reflection on which kind of science would be facilitated by metaphors created in the course of such a dialog. Which direction would the study of human genomes take? How would it differ from a science influenced by metaphors that describe humans as genetic programs? How would our vision of our future societies and ourselves be shaped by an epistemology that sees all knowledge systems and all cultures as partners in our search for self-knowledge?
Many thanks to Barbara Nicholas for our stimulating discussions about an ethics of metaphors in science and her enthusiasm and support of this work.
(1) Sandra Harding, "Multicultural and Global Feminist Philosophies of Science: Resources and Challenges," in Feminism, Science, and the Philosophy of Science, ed. Lynn Hankinson Nelson and Jack Nelson, Synthese Library: Studies in Epistemology, Logic, Methodology, and Philosophy of Science (Dordrecht, The Netherlands: Kluwer Academic Publishers, 1996), 263-287.
(2) Donna J. Haraway, Modest_Witness@Second_Millennium.FemaleMan
(3) Roy Perrett, "Individualism, Justice, and the Maori View of the Self," in Justice, Ethics, and New Zealand Society, ed. Graham Oddie and Roy Perrett (Auckland: Oxford University Press, 1992), 27-40.
(4) D. Haraway, (1997), p. 247.
(5) Dorothy Nelkin and M. Susan Lindee, The DNA Mystique: The Gene as a Cultural Icon (New York: W. H. Freeman and Company, 1995).
(6) Lynn Margulis and Dorion Sagan, What is Life? (London: Weidenfeld & Nicolson Ltd, 1995).
(7) James E. Lovelock, Gaia: A New Look at Life on Earth (Oxford: Oxford University Press, 1979).
(8) David J. Depew and Bruce H. Weber, Darwinism Evolving:System Dynamics and the Genealogy of Natural Selection (Cambridge, Massachusetts: MIT Press, 1996).
(9) Bonnie B. Spanier, Im/partial Science: Gender Ideology in Molecular Biology, ed. Anne Fausto-Sterling, Race, Gender and Science (Bloomington and Indianapolis: Indiana University Press, 1995).
(10) Emily Martin, "The egg and the sperm: how science has constructed a romance based on stereotypical male-female roles," Signs 16, no. 3 (1991), 485-501.
(11) Susan J. Hekman, Moral Voices, Moral Selves: Carol Gilligan and Feminist Moral Theory (University Park, Pennsylvania: Pennsylvania State University Press, 1995).
(12) Donna Haraway, (1997), p.247.
(13) Sandra Harding, (1996), p. 271.
(14) Deborah Baird, "Whose Genes Are They Anyway?," in Report from the Health Research Council on Human Genetic Information (Wellington, 1995).
(15) New Zealand Association for Women in the Sciences (AWIS), "Women, Science and Our Future," (Wellington, 1996).
(16) Aroha Te Pareake Mead, "Genealogy, Sacredness, and the Commodities Market," Cultural Survival Quarterly , no. Summer (1996), 46-51.