Claus R. Bartram
How transparent is the human being now that his genome has been decoded?
The first stage of the genome project has considerably broadened our insight into the genetic make-up of the human being. For the foreseeable future, however, key aspects of the replication of genetic information will remain largely unknown, for example characterisation of precise genetic functions, their activation at specific times and for specific tissues, and the interaction of their products in numerous signalling control circuits. In this respect, the buzzword "visible human" is misleading. In the field of medicine there is another dimension of complexity; here it is not only a matter of the normal functioning of genes but also the impact of distinct changes (mutations) of one or several genes – in some cases interacting with exogenous factors – on the course of an illness. Genotype/phenotype correlations are becoming increasingly important with regard to clinical decision-making processes. Ultimately, almost all diseases are amenable to a complex, individually modified process of development. Pigeonholing in terms of diagnosis and therapy no longer tallies with the state of knowledge in modern medicine. The possibility of recognising genetic dispositions that favour the outbreak of a specific disease confronts us with a new situation. One example is heredofamilial forms of tumour diseases. This kind of predictive diagnostics should always be entrenched in an interdisciplinary treatment concept including an in-depth discussion of possible results, the validity of the test, and consequences prior to molecular analysis. This paper will also discuss another set of problems: prenatal diagnostics including the possibility of preimplantation diagnostics. As a whole, there is a rising demand for adequate information concerning basic genetic causes of diseases, such information often being of importance not only to patients or those seeking advice but also to their families. The cross-generation dimension of medical care is a particular feature of human genetics counselling. It is notable that in this age of technical revolutions and rapid information leaps, the future belongs to "communicative medicine" that caters for the individual patient.
Recent developments in the human genome have indicated problems in standard notions of the way we categorize the body. Our older categories of abled/disabled, normal/abnormal, particularly as these notions play out in the new genetics, seem antiquated. In the area of prenatal genetic testing, especially, one has to reexamine notions of defect, disability, and normality. The category of disability is now facing a postmodern assault on its status, not only from theorists but from science and the courts. In allied areas relating to gender, ethnicity, and sexual preference, genetic researches have raised questions on the status of absolute categories. How are bodies now "marked" as different or the same under a the paradigm of the human genome? If categories like "race" are now seen as invalid genetically, how should we regard other "abnormalities?" Do we need a new ethics of the body as the foundations of the disability/normality paradigm begin to disintegrate under the pressure of the postmodern-globalized body? The human genome project gives us the opportunity to reformulate the relation between the body and the state, and to redefine categories of identity that had been dependent on a politics of difference inaugurated during 19th century discourses and regimes of domination. Multiculturalism, often dependent on notions of bodily difference or on ideas of social constructionism relating to perceived bodily difference, may have to move toward a newer and enlightened cosmopolitanism and universality.
The everyday gene – comments on the genes in our minds.
For a long time now, I have been occupied with the contemporary history of experienced, bodily self-perception. In just a few years, "genes" have become an important element in the way women perceive their own bodies. I will explicitly refrain from giving any opinion as to what a "gene" is in terms of economy, industry or science, restricting my analysis exclusively to these genes in our minds; to be precise, the genes in the "self", one's own genetic make-up, to which we refer in the first person singular. So what I am interested in is the genetic text as "read" by me, its phenotype.
BODY PARTS, LARGE AND SMALL
Our organs - such as the heart, or the kidneys - are big parts of our bodies. Our genes are tiny ones. Until recently both types of body part were inseparable from our selves: they constituted different aspects of our bodily essence. Some of these parts might become ill, but we could do little about that. All that has changed. We transplant organs, and, somewhat illicitly buy and sell them. If genes are information, whole populations - Icelanders - sell their genes. This seems to produce a complete change in the way in which we conceive of our relationship to our bodies. Or is it the fulfillment of a Cartesian dream, whereby bodies just are machines in space, while the mind inhabits another realm?
Genetic engineering and the social discourse
The continuity of the conflict centring on genetic engineering that began in the seventies and has continued until today obfuscates the fact that the issues discussed have changed with the development of genetic engineering, from research methods to applied science. Whereas the debate initially focused on questions of laboratory safety, these have gradually be replaced by the social impacts of applying this technology. Following the birth of Dolly, the first sheep to be cloned from the cells of an adult sheep in February 1997, the focus of public discussion shifted away from green genetic engineering that had prevailed up to then and over to the application of genetic engineering in humans. Not only the issues under discussion have changed in the course of the genetic engineering debate but also the social space in which these controversies are fought. Whereas they were still restricted to the scientific community in the seventies, since the eighties the discussion has opened up into a broad social controversy. Scientists, politicians and representatives of the business world, seeing the exploitation of scientific and economic potential of genetic engineering jeopardised by these disputes, perceived this broadening of the social basis of the genetic engineering discussion as a threat. Public discussions were dismissed as irrational and emotional. Empirical studies into the perception of genetic engineering by the public come to a quite different conclusion. The reason for differing assessments of scientists and the general public is not that the former, scientists, judge rationally while the latter, the public, judge emotionally - rather they are due to different yardsticks. This is a clash of different rationalities, not of rationality and emotionality. Ultimately, these discussions are essentially not about ascertaining scientific facts but rather about the question of how we want to live in future. While genetic engineering applications in agriculture and food production are seen with some criticism by the European public, indeed increasingly so in recent years, medical application of genetic engineering meets with broad approval. However, more in-depth studies reveal that this approval is in fact ambivalent. The public is well aware of the fact that, along with the expectations with regard to cures, we also need to consider negative consequences of medical applications of genetic engineering, from the risk of abuse to changes in our canon of values. In this, genetic engineering is a direct successor of primeval human myths about the creation of man by man, from the alchemist's homunculus to the golem, to Frankenstein's creature. It is therefore no coincidence, once the technical conditions were in place, that medical applications of genetic engineering sparked off virulent social controversies, from the use of embryonic stem cells, to preimplantation diagnostics, to the often presaged cloning of human beings. Unlike green genetic engineering, with regard to which the public could revert to the standpoint that there was essentially no demand for this development, medical genetic engineering confronts us with dilemmas that are no quite as easy to resolve. Unlike green genetic engineering, which has opposed any discussion of ethical issues up to the present day, ethics commissions and ethics committees are being installed left, right and centre in order to solve decision-making problems posed by the genetic engineering development in the field of medicine and diagnostics. This institutionalisation of the discussion will most likely not suffice to satisfy society's need for discussion; most certainly such commissions will not be able to reach binding decisions in society's stead. Therefore, a broad social discourse of these issues is indispensable.
Peter Ulrich Hein
Stereotypes of individuality. Perspectives of genetic engineering and sociology on the cult of the body.
The genetically manipulated (or worse still cloned) human being seems to run counter to an aspect of human dignity that constitutes a key value of developed societies in the concept of individuality. An analysis of the aesthetic patterns mobilised for processes of individualisation, however, reveals a growing tendency to stereotype the attributes ascribed to the individual. Alongside a cult of the expressive, healthy and virtual body, a "naive body cult" in particular is establishing narrow standards of psychophysical optimisation. On the premise of aesthetic stereotyping, the cultural perspectives of standards established by means of genetic engineering lose their paradigmatic force as the conventional mechanisms of social norm formation increasingly become the focus of attention once again: the acceptance of personality profiles generated by means of genetic engineering is thus not geared to relevant scientific and industrial offers but rather to the conceptions of reality of everyday aesthetics in different milieus and user communities of society.
Conceived Made Destroyed. Reductionist image of the human being as a condition for selection
The current gold-rush mentality and general auspicious expectations regarding cures is only faced with the dignity of the human being – which is now at stake. The situation is simple and simplistic. Scientists want to research with the aim of healing and of gleaning new knowledge. That's what research is for. But where to research - research is carried out on the human being. This is nothing new, this is the pre-condition of medicine. What is new is the fact that the human being becomes an object coveted by scientists. Developing life, developing human beings become objects and are used up. Not because unscrupulous Frankenstein engineers have set out in search of new horizons, but rather because – supposedly – healing gravely suffering, ill, disabled people so demands.
Scientists, doctors as innocent service providers whose only wish is to follow the call and will of the people.
Reality is somewhat different. Today, people with disabilities are seismographs of a society succumbing to the normative power of the factical. Daily discussions of the right to life, quality of life of patients and disabled people create the image of a society that can no longer endure deviation from the norm. Disabled people's self-awareness and pride are no longer desired. The disabled person, the sick person is the object of his healing; if this goal is not attained, the object is free for selection.
Is this reality? Is this polemics? Is this the disappointment of an optimist in a world of ethical demise?
The Atomic Weapon of the Poor? The Biological Weapons Threat and Multilateral Controls
The paper will start with a discussion of what biological weapons (BW) are. In this context the specter of biological warfare agents will be introduced and the dual-use problem addressed. The threats emanating from BW will be subdivided in three more specific challenges that can be identified in the BW-realm. First, BW proliferation as such will be analyzed. To this end, the motivational side of proliferation efforts will be highlighted and a few historic examples will be briefly presented. Secondly, the recently identified challenge of bioterrorism, i.e. the proliferation to sub-state actors, will be analyzed, and thirdly, advances in biotechnology and the prospects of novel biological warfare agents will be discussed. When considerering countermeasures to these threats, the 1972 Biological and Toxin Weapons Convention (BTWC) takes center stage. After outlining its scope, achievements, but also deficiencies, the efforts to compensate for the latter through the negotiation of a legally binding verification protocol to the BTWC will be traced and assessed. This multilateral foundation of efforts to control BW are complemented by – mostly – national export controls as well as biodefense measures including counter-bioterrorism measures. Both of these types of measures will be outlined and assessed as to their utility to strenghten multilateral efforts to prevent or counter the proliferation of BW.
Cut 'n' Mix. The reinventions of the body
Modernism has a paradoxical relationship to the body. On the one hand, critics of modernity assume that the body is disappearing, and for more than a century have been ascribing this to the fact that relations of work and communication are becoming increasingly abstract. On the other hand, however, they also maintain that the recrudescent cult of the body in fact amplifies its significance. This enhancement of the significance of the body, they say, manifests the displacement of ethics by aesthetics, of empirical experience by lived experience. The paradox of disappearance and appearance, depreciation and enhancement of status, is also manifested in the discourses of biological, genetic and media technologies. The technological fragmentation of the body, its dismemberment and division profoundly challenge modernism's concept of the body and provoke its recontextualisation. The body is reinvented. In this talk I will discuss the correspondences between the everyday techniques of design and enactment and the reconceptualisations of the body that are concomitant with biological and media technologies. I will describe the postmodern figure of thought of the body as a cut 'n' mix technique encountered equally in the various spheres, whereby the body is perceived as fundamentally amenable to being shaped. This expresses a radical transformation of the figures of thought of the body: the "whole" body of representation that is perceived as processual and essential is replaced by the body that is constructed and created in performance. The paradox of disappearance and appearance characteristic of modernism seems to be dissolving into new forms of embodiment.
The crave for technology and the economy
The crave for technology – the desire for self-realization and perfection by means of technology. It is the wish of the solitary individual in consumer society, detached from all bonds, to differ by possessing objects. Today such objects are, for example, the products of technology, that are constantly appearing on the market in new and improved forms. If the technical innovation of the human body makes the effort, what we see is a new level of individual self-perfection by means of technoid substitutes for the "old" body now declared to be "obsolete": the replacement of one's own senses by multi-media PCs, the replacement of one's own creativity by machines, and the substitution of body parts by prostheses. Estranged from one's self as a living, feeling entity, the solitary consumer-self is also indifferent to the encounter with the other. It steals out of the human park, dives into the gene pool and emerges with a new leisure body.
Basic rights for early embryos? Normative foundations of preimplantation diagnostics and stem cell research
I. Preliminary consideration: Distinctions
1. Objections to the permissibility of destructive embryo research can be formulated from two different perspectives: with regard to issues of protecting the embryo itself and with regard to issues of protecting the general public. There is a normative hierarchy between the two aspects: first it is necessary to clarify the status of the embryo regarding its protection. For this status could perforce entail a categorical prohibition of any kind of destructive research. This would obviate further considerations with regard to society.
2. There are two potential foundations regarding standards: law and ethics. Here, too, there is a hierarchy: first and foremost the legal situation must be clarified. For if protection of embryonic life were to be enforced by the fundamental articles of the constitution (Art. 1, Protection of Human Dignity, and Art. 2, The Right to Life), all ethical ponderings would become a glass bead game. These articles cannot be modified. Any deviating demands would be unrealistic.
A. legal analysis at the level of simple law, the embryo protection act (Embryonenschutzgesetz - ESchG) of 1991, reveals a prohibition of any destruction of extracorporal embryos. The wording of the Basic Law, on the other hand, does not contain such a prohibition. The only possible source for basic right status of the embryo is thus the two rulings of the Federal Constitutional Court (Bundesverfassungsgericht - BVerfG) on abortion (1975 and 1993). Both rulings postulate a fundamental right of the embryo regarding life and dignity (which is why "counselled" abortions would have to remain illegal). Nevertheless, such a right does not exist in current law. The ruling from 1993 contains a self-destructive contradiction. On this basis, all authorities involved in enforcing the law in this society treat "counselled" abortions as lawful. And that makes them just that. What we call them is irrelevant. A basic right of embryos to life and dignity is thus excluded de lege lata. The legal analysis thus reveals a constitutional tabula rasa and a prohibition at the level of simple law. Because the latter may be modified, the ethical question arises as to whether it should be.
1. With regard to the embryo itself, we can formulate four possible arguments in favour of establishing an (ethical) protection status concerning life and dignity. I call them the species, continuum, potentiality and identity arguments. None of these arguments can found the ethical postulate of a fundamental embryonic right to life and dignity. My analysis distinguishes between three foundations for moral obligations and for the corresponding rights of others: prohibition of injury (corresponding to genuinely subjective rights), obligations of solidarity (corresponding to aspects of protection that can be weighed up in principle), protection of norms (with the possible consequence of allocating subjective rights). The result of the analysis: embryo protection is an obligation of solidarity; considerations regarding protection of norms do not render an allocation of subjective rights for embryos plausible; obligations of solidarity can be weighed up; the wishes of prospective parents for a healthy child (preimplantation diagnostics) and the therapeutic possibilities offered by stem cell research clearly outweigh the obligations of solidarity with regard to early embryos.
2. Issues concerning the general public do not substantially conflict with this result. Contradictory claims are implausible even in their empirical predictions. And it is ethically impermissible to block morally imperative primary effects outright because of the remote risk of unwanted social side-effects (that could be corrected at any time).
Biomedical research is racing ahead. Its progress follows the pattern of genetics. The promises are great: cures for diseases thanks to stem cell research that uses human embryos as its raw material; selection of genetically burdening embryos at the parents' wish. Where do dreams of a better, healthier, more successful life become nightmares, where do eugenic thoughts creep in again through the back door of hi-tech research? How do the image of the human being and values change in society in the process? Dietmar Mieth demonstrates the moral problems involved when the future becomes fiction and we relinquish fundamental values. A plea for responsible handling of what humans are capable of doing - and for an ethics that does not resign in the face of complex problems.
Biotechnology, ethics of university research and potential military spin-off
This contribution provides a brief introduction to the biotechnology revolution and its impact upon biological research relevant to military uses. Three examples of dual-use research activities are then used to highlight issues and dilemmas in ethical decision-making. The model of a constructive and prospective peace ethics was applied to these three examples. Rules for consideration of worth as well as rules for decision-making in the light of uncertainty were introduced, in order to assess the justification of these research activities. The aspect of preventive arms control exemplified in this contribution seeks to assess new technologies at an early stage in development, at the research level. Because of the pronounced dual-use aspects of biotechnologies, it is very difficult to advocate the prohibition of any type of biological research. The proposed exercises in monitoring and applying ethical decision-making rules to research enhance transparency, and can therefore serve as an early warning signal for activities not justifiable as peaceful. This is a communicative process, in which all parties concerned and affected should participate.
Race, Genetics, and Reproductive Technologies
Radical feminists have argued that reproduction-assisting technologies enforce traditional patriarchal roles that privilege men1s genetic interests and objectify women1s procreative capacity. Adoption advocates criticize the preference for genetic ties that drive so many infertile people to high tech means of conception. There are also religious objections to the use of technology to produce children. Despite these criticisms, a resurgence of public interest in genetics and reproductive technologies has intensified the social importance of genetic relationships.
Fewer social critics have examined how race influences the use of reproduction-assisting technologies. While acknowledging that women of color are the most vulnerable to reproductive control, the feminist critique identifies male domination as the central source of the oppressive use of reproduction-assisting technologies. But these technologies also reflect and reinforce racist standards for procreation. The U.S. definition of race as an inherited trait powerfully links genetics to race. The social and legal meaning of the genetic tie helped to maintain a racial caste system that preserved white supremacy through a rule of racial purity. In the U.S., ensuring genetic relatedness was critical to preserving white racial purity. Race may influence the importance whites place on the central aim of in vitro fertilization – producing genetically related children. Using technology to create genetic ties focuses attention on the value placed on this particular form of connection. Moreover, cases involving Black gestational surrogates provide a contemporary example of the continued importance of racial demarcations and reinforce the importance of genetic parentage.
The new reproduction also graphically discloses the disparate values placed on children of different races. By trading genes on the market, these technologies lay bare the high value placed on whiteness and the devaluation of blackness. While creating white children merits spending billions of dollars, Black children are the object of welfare reform, child welfare, and other measures designed to discourage poor women1s procreation and to disrupt their maternal bonds. This distinction can also be seen in the popular media1s coverage of stories that involve white and Black children produced by these technologies. Examining the relationship of race, genetics, and reproductive technologies should force us to confront the racial disparity in the valuation of procreative decision making and family ties.
Barbara Katz Rothman
Constructing Race: An American View
American ideas about race are always embedded in our history of slavery, in which race determined personhood. People of African descent were not people, not fully human, recognized legally as at best 3/5ths of a person before the law, but without rights of citizenship, of legal and moral personhood. Race was carried in the blood: one drop of black blood marked a person, made a person less than a person, reduced a person to the status of an American black. As the science and technology of genetics develops, blood has ceased to be the powerful metaphor it once was. Essence has moved further inward, from blood to genes. No longer visible, no longer divisible, race has moved inward from body to blood to genes, from solid to liquid to a new crystalization, fragmenting into discrete "traits". But as the science and technology get more powerful, the historical burdens of race grow no less heavy. We have no way to confront our history of race – in America as in the rest of the world – without standing in that history, no way to look back or ahead but from where we now stand. To talk about race in America is still to talk about people of African descent. And sometimes it feels as if talking about anything in America – poverty, intelligence, health and illness, sexuality, reproduction, life, liberty and the pursuit of happiness too – is talking about race. As a white American mother of two white children and one black child, I stand in a particular place, as each of us does, and invite you to explore with me the implications of the new genetics for thinking about race.
The "GENE" as a Trojan horse: comments on the release of genetic concepts
For years, ecological studies and critics of genetic engineering have been warning of the risks that growing BASTA-resistant maize or rape could entail. A different form of release, that has already caused a great deal of damage, has so far been overlooked: the release of genetic concepts. Drawing on the example of genetic counselling, I would like to demonstrate that talk about "genes", "genetic diagnostics" and "genetic diseases" sneaks a new form of thought into everyday life. The belief that we possess "GENES" that determine our so-being opens the floodgates to self-conception in the form of statistical and cybernetic concepts: "risk", "information", "option" and "decision" have become the key buzzwords of medical education.
In the consultation sessions I analysed, geneticists inform pregnant women about genetic processes of cell division, probability distribution of clinical abnormalities in new-born children, and about prenatal testing options. With the aid of this information, the aim is to enable the consultees to make independent decisions. By example of these consultations, I would like to show how releasing genetic concepts encourages us to see ourselves - and the child to come - as an optimisable risk profile, and the aporias that this insane, misplaced perspective must inevitably produce.
The experimentalisation project: Approaches to a cultural history of life sciences, 1830 -1930
From the viewpoint of the humanities, one of the most pressing tasks is to reappraise the new productivity of "biopower" in order to prevent the much-lamented distance of the "two cultures" at this decisive point in time. The concept of "experimentalisation" plays an important role in this context. Here, experimentalisation refers to a process that began at the beginning of the 19th century all over Europe, reconfiguring the world of science, art and technology. With experimental physiology becoming established as a leading science of the 19th century, psychology and linguistics also became laboratory undertakings. Experimental cultures began to crystallise in other places, too. For example, there emerges a literature that falls back increasingly on methods of automatism, aleatory and combination theory. New media such as photography and film are changing the arts and the sciences. Cities as a whole are becoming fields of experimentation in which life-experiments are being performed. At the beginning of the 20th century, the process of experimentalisation had advanced so far that the hybridisation of methods and qualifications and the increasing miniaturisation of test objects gradually gave rise to "molecular sciences", for example in biology and neuropsychology, but equally so in linguistics and, more generally, in nascent structuralism. Drawing on case studies from physiology and psychology of the late 19th century (protozoa research, reaction tests) I will discuss the perspectives of an examination of the history of experimental life sciences founded on insights of cultural science.
Autonomy and creatureliness
Every human being has the inalienable right not to have to see himself as another person's creature. I call this right "the right to creatureliness". Whereas our autonomy is not restricted by the fact that we see ourselves as creatures of God or of Nature, it is restricted by the fact that we must see ourselves as other people's creatures. Our normative perception of the human being is based on the average human because the average human clearly displays those properties that are key to the notion of creatureliness. When, on the other hand, the genetic engineer assumes the role of a demiurge, then he tends to want to modify those properties in such a way that all creaturely beings become creatures that can no longer be autonomous.
Gene patents in Jurassic Park
From the viewpoint of human dignity and environmental ethics, a new chapter is being written by patents that can even apply to parts of the human body, mammals and plants: if living beings can become the "intellectual property" of genetic engineers, if they are redefined as man-made products, they lose their intrinsic value. In Jurassic Park Michael Crichton writes on the rights of dinosaurs: "For all practical purposes, an animal that is extinct and then resurrected is not an animal at all. It cannot have rights. ..... If it nevertheless exists, it can only be something that we have made. We made it, we patent it, it is ours."
Comments on biopolitics
The success of biological and genetic technology is not only a scientific but also a cultural phenomenon - not only because the scientific development poses new challenges to our moral standards, but also because it is accompanied by fantasies of a new self-perception of the human being or indeed his transformation into a "spiritual machine". One reason why genetic technologies or "life sciences" attract so much attention is because the traditional interpretation of human "life" was based on a precarious, fragile model that is now beginning to teeter. The aim is to analyse this model and this teetering. A helpful term for this purpose is "biopolitics", with the aid of which we discover a dynamics stemming from the heart of our traditional self-perception. In fact, this dynamics displays all the symptoms of a crisis, and this crisis in human self-perception - alongside the debates on genetic engineering in the narrower sense - is a problem in itself that must be critically discussed.
TRANSPLANTATIONS IN THE HUMAN PARK. "Evolution in our hand"
Modernism referred back to biology and gender, postmodernism refers back to molecular biology and the brain. Not reproduction but implantation, not germ cells but stem cells are on the agenda now. In the human park we are switching from the model of breeding to the model of control. Organic matter and cybernetic technology are knitting together as if they belonged together: "For the first time, thanks to findings in genetics, neurobiology and embryology," a UNESCO paper reads, "[humans] ... have also gained the power to transform the development processes of every species of living being, including their own". This is why one question raised in this talk is whether this is asking for trouble.
Eugenics. Rehabilitation of a disreputable concept
Eugenics has become one of the bogey words in the debate on genetic engineering, where once, as the old-fashioned name "Eugene" suggests, it used to stand for something desirable and worthwhile. Its misuse brought it into disrepute.