Germ-line gene "therapy": Public opinions with regard to eugenics.
Sigrid Graumann, 1999
In: Hildt, Elisabeth/Graumann, Sigrid (eds.): Genetics in Human Reproduction. Aldershot, pp. 175-184
Scientists and ethicists often lament the emotionality and irrationality of the various positions maintained by critics of germ-line gene "therapy" [ 1 ] in political discussion and in the media. This is particularly the case with respect to positions which rely on a characterisation of germ-line gene "therapy" as eugenic (Fletcher 1995). The role of applied ethics in this context is primarily viewed as that of contributing to the rationality and objectivity of the discussion. The public is to be informed. [ 2 ] I want to advance the hypothesis that the bioethical discussion up until now has not achieved this and has not been able to achieve it, because under the notion of eugenics quite different things are understood. According to position and context, the notion of eugenics is given a biological, historical or socio-cultural interpretation. I will briefly sketch these three different interpretations, which incidentally are not always separable, so that I can afterwards show which positions and arguments are to be located on which level of interpretation. I want to argue that it is possible to reconstruct rationally a core of the positions which rely on a socio-cultural understanding of eugenics and that this core provides a good argument against germ-line gene "therapy". First however I want to address the positions which are maintained in the public.
The discussion of germ-line gene "therapy" in the German media
When germ-line gene "therapy" is referred to in the German media it is generally handled like a hot potato and treated with considerable reserve. For the most part, it is rejected "on account of the intentional transmission of altered germ-cells". [ 3 ] When negative consequences are pointed out, alongside incalculable risks, "eugenic consequences" [ 4 ] play a particular role:
"Whoever allows this kind of therapy accepts the next step to the intentional direction of genetic material, to eugenics, as well." [ 5 ]
Nevertheless, one can in no sense speak of uniform rejection or ban on discussion of germ-line gene "therapy" in the German media. Future "help for suffering human beings" [ 6 ] or the possibility that "the frequency of serious inherited diseases can be cut down" is also discussed. [ 7 ] The various attitudes in the media demonstrate however the controversial nature of germ-line gene "therapy" in public debate and witness the fact that germ-line interventions are associated with "eugenic consequences" which are in general rejected.
What does "eugenics" mean?
Francis Galton introduced the notion of eugenics in 1883. By this term he understood the applied science of human genetics with the goal of limiting the distribution of genes with disadvantageous effects in human populations on the one hand (negative eugenics), and of maintaining or even increasing desired gene-constellations on the other (positive eugenics). [ 8 ]
This means that the biological definition of "eugenics" in modern scientific discourse is the improvement of the human genome. In this context the issue is not the genome of an individual human being, but rather the gene pool, which is defined as the genes of the or a human population as a whole. It is also important that although "eugenics" is scientific notion, it nevertheless, due to its aim of "improving the human gene pool", contains an unambiguously normative presupposition. If therefore one speaks in the context of germ-line gene "therapy" of eugenics in a biological sense, a genetic manipulation of the human germ-cell with the goal of the genetic improvement of the human species (or of a particular community of human beings, for example a "race") and therefore a material change is meant. [ 9 ]
Eugenics received its historical significance through its political application in Europe and North America in the first half of this century and here particularly due to its connections to the crimes which were carried out in the name of eugenics during the Third Reich. [ 10 ] In Germany, the "Law for the Prevention of Genetically Ill Progeny" was enacted in 1933, as a consequence of which hundreds of thousands of allegedly "genetically damaged" people were sterilised. In 1939, the bureaucratic preparation of the eugenically motivated euthanasia programme began. By the time public discontent led to the official discontinuation of the euthanasia programme in 1941, more than 70,000 patients had been killed (Schmuhl 1987, p. 220 ff.). [ 11 ] After the end of the Second World War, the full extent of the crimes which had been committed against sick and handicapped in Germany in the name of eugenics was made internationally public.
"In the years after World War II, eugenics became a dirty word." (Reich 1995)
From the perspective of historical investigation, eugenics is to be understood as a social project, in which eugenics as a scientific discipline - and it was as such in contemporary scientific community acknowledged and established - admittedly plays a decisive role, but which at the same time is not limited to this. The clear interweaving of science, ideology, research and demographic politics in the notion of the "improvement of the human race" is evidence of this. If reference is made in the context of germ-line gene "therapy" to the historical experience of the crimes which have been perpetrated in the name of eugenics, this is going beyond the historical facts. The continuity of eugenic goals in science and politics is being asserted and a warning is being given about new violations of human rights of which science and politics are considered to be capable on account of historical experience (Meyer-Seethaler 1997, p. 311).
The socio-cultural perspective concentrates, thus overriding the historical experience of the crimes of eugenically motivated politics and the danger of a "relapse", on the interrelationship between science, politics and mass consciousness in the contemporary world. Eugenics is described as a socio-cultural phenomenon which develops not by means of laws, repression and violence, but rather through the "regulation" of mass consciousness. There is talk in connection with prenatal diagnosis of "mothers under the pressure of private eugenics" [ 12 ] or of the preparation of a "eugenic thinking". [ 13 ] Positions against germ-line gene "therapy" which refer to a socio-cultural understanding of eugenics of this sort fear that due to the interconnection of science, politics and mass consciousness, social norms and pressures become established which make free and responsible decisions with respect to an offer of germ-line gene "therapy" impossible. In the words of Elisabeth Beck-Gernsheim, the profile of demand for parents would change - the "quality child" would become a "social duty" (Beck-Gernsheim 1991, p. 56). [ 14 ]
Bio-ethical answers to the fear of a "new eugenics"
In the (international) ethical discussion of germ-line gene "therapy", a whole row of controversial positions have been maintained which are clearly based on a purely biological but nevertheless normative understanding of eugenics (a reduced understanding for anlytical purposes) which has in that form scarcely played any role in the public debate (in the German media). So for example it is argued that through the elimination of monogenetic defects, future suffering could be avoided, or that there can be no objection to improving the human genetic constitution with a view to reducing suffering (Zimmerman 1991). There can be no objection to germ-line gene "therapy" as a form of positive eugenics, since we already intervene in the human genetic constitution in prenatal genetic diagnosis. (The comparison with established practices, however, says absolutely nothing per se about the moral legitimacy of such practices.) Opposing voices fear a loss of genetic diversity in the human gene pool which could offer possibilities for adapting to changing environmental conditions. Against all these "evolution arguments", Davis objects that "principles of population genetics offer no support for this hope". Given that most homozygous genes which can lead to a monogenetic disease are recessive and therefore occur unnoticed in the population, and that dominant inherited defects in most cases arise through new mutations, germ-line gene "therapy" cannot achieve "the theoretical ideal of purifying the gene pool" at all (Davis 1992). This is certainly a valid and important argument: it does not, however, banish the fear that eugenic goals are held to despite this, so to speak "irrationally".
Various concrete arguments have also been criticised in the ethical discussion of germ-line gene "therapy" which have been maintained in the political sphere and in the media. Among these positions are arguments to the effect that we shouldn't play God (Rifkin 1986), and the rejection of intervention in the germ-line with reference to nature or to a right to the randomness of the genetic origin of the human genome (Catenhusen et al. 1987). The fact, however, that a situation up to now has been physically unchangeable is not in and of itself a good reason for its morally unchangeable, even when the burden of proof resides with those who want to alter the existing circumstances (Wimmer 1989). These kinds of arguments for or against germ-line gene "therapy" appear in general to see in the human genome a "collective soul of mankind, the human essence, in which we all participate" (Mauron 1993). From the perspective of a socio-cultural understanding of eugenics, one can accuse all of these positions not only of not being maintainable, but even of promoting "eugenic thinking".
From the perspective of a deontological conception of ethics, a genetic improvement with eugenic goals is not compatible with our understanding of human rights, the dignity of the human being, the nature of the person as a good in and of him- or herself and her or his resulting freedom of self-determination (Wimmer 1989). That is in may opinion the most important argument against germ-line gene "therapy" with a eugenic purpose. If, however, eugenics today is indirectly expressed as a socio-cultural phenomenon by means of social norms and pressures - and this is obviously a major concern in the public debate - then this position does not address the entire problem.
The discussion of so called "slippery slope" arguments in the ethical discussion of germ-line gene "therapy" can be understood as a reflex to those fears in the public debate which refer to a reoccurance of historical experiences with eugenics. Here the decisive question is seen as being whether in a democratic society in contrary to a totalitary regime a boundary line can be drawn between therapeutic and non-therapeutic uses of germ-line gene "therapy" by means of moral and legal regulations. In this sense it is suggested, for example, that the distinction between "maladies" and "non-maladies" be the boundary line. Suffering is only then to be described as a "malady" when it is connected with "death, pain, disability, loss of freedom and pleasure." In such cases , a "general interest of avoiding these evils" can be reckoned with. Germ-line gene "therapy" is to be limited to maladies because borderline conditions contain the danger of a slippery slope (Berger and Gert 1991). Against such attempts at drawing boundary lines because of the danger of sliding down the slope, Gardner argues that "the relevant moral distinction will not adequately influence our choices", for the reason that genetic enhancement "will be undermined by the dynamics of competition among parents and among nations" (Gardner 1995). As further factors which could facilitate a slippery slope development, the alleged prevalence of the perception of eugenics in society (McGleenan 1995) and "the force of scientific interests" are mentioned. I doubt, however, that here the concerns of the public about the development of a "new eugenics" are really being addressed. From the historical perspective one would have to say that eugenically motivated sterilisations and murders were carried out on genuinely sick and handicapped individuals without them being any the less morally reprehensible. For this reason even the basic distinction between "enhancement" and "therapy" in this context doesn't seem to be valid. Beyond this, most of these attempts to draw boundary lines imply at least the "life worth living" predication of "eugenic thinking" as well.
The socio-cultural phenomenon "eugenics" as an argument against germ-line gene "therapy"
According to an understanding of "eugenics" as a socio-cultural phenomenon, however, it is precisely in this "life worth living" predication, along with the availability of the new medical techniques, that the problem lies. Viewed form a sociological perspective, the standards against which actions are evaluated begin to shift as soon as changes start to take place in the scope for action (Beck-Gernsheim 1991, p. 41). To use Foucault's word, the biopower is here at work. "Biopower" is directed at individuals as well as at the population as a whole. It intends monitoring, control and increase of the physical efficiency of individual bodies as well as the regulation of the population (Foucault 1983, p. 61 ff.). This modern form of power is not something which is outside society and affects it from outside, but rather a phenomenon which permeates society itself. [ 15 ]
"We find ourselves accordingly inside a power which has taken control of the body and of life, or which (...) has occupied life with the poles of the body on one side and the population on the other." (Foucault 1983, p. 40)
The relationship between the individual and the social dimension of germ-line gene "therapy" can be understood with Foucault as a phenomenon of the "society of normalisation" in which the norm of the disciplining of the body and the norm of the regulation of the population are bound together (Foucault 1983, p. 40). This means that the norms which are produced in the "truth discourse" of the medical community and the norms which are reproduced in other discourses in, for example, the media which relate the question of what is to be considered as sick and healthy, or rather desirable and undesirable, are aimed, together with the new medical techniques (the future availability of germ line gene "therapy" and the already available prenatal genetic diagnosis), at the disciplining of individuals with respect to their decisions about reproduction and at the regulation of the quality of the gene pool. And precisely this is eugenics as a socio-cultural project which is carried out by means of supposedly "autonomous" individual decisions. The controversial and emotionally loaded discussion of germ-line gene "therapy" and of gene- and biotechnology in general can be interpreted as an expression of the fact that the issue has to do with a hotly contested field of the "biopower" or rather of "biopolitics": as Foucault points out, power and resistance against power always occur together. The "emotional" voices in the public debate which argue against germ-line gene "therapy" with recourse to its "eugenic character" would in this case be reflexes of resistance to an indirect heteronomy in decisions regarding reproduction. The development of germ-line gene "therapy" would undermine the right to make free decisions with respect to future parenthood. [ 16 ] Given that freedom is the prerequisite for moral actions and that the availability of germ-line gene "therapy" would be connected with serious moral problems, there are a number of things which from a socio-ethical point of view speak against the development of germ-line gene "therapy". Perhaps Foucault can be interpreted in this sense when he advocates that we give ourselves "the legal rules, the leadership techniques and also the morals, the ethos, the praxis of the self, which make it possible to play within the power games at the cost of a minimum of dominance" (Foucault 1993, p. 25).
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- The word therapy is consequently set in signs of quotation because it is not clear at all if their could be a therapeutic option of germ-line genetic engineering.
- Not only in the popular media, but also in medical and ethical publications authors work with the expected emotional response of the reader. This takes place, for example, in case-discriptions, when the probable future deterioration of a child with a particular genetic disease is movingly described. In the example which has been analysed by Tod Chambers with respect to the rhetoric of case-descriptions (in a different clinical context), the role of emotional responses becomes particularly clear (Chambers 1996).
- From an analysis of the Frankfurter Rundschau, Jäger et al. 1997, p. 123.
- From an analysis of the ZEIT, Jäger et al. 1997, p. 183.
- From: "Darf man in Keimzellen eingreifen?" ZEIT 24, 6. 1994, cited according to Jäger et al. 1997, p. 183.
- From an analysis of the ZEIT, Jäger et al. 1997, p. 183.
- From an analysis of Focus, Jäger et al. 1997, p. 218.
- This is expressed in newer terms; Galton did not use the word gene, because this expression for a unit of inheritage was later introduced by Johnson.
- It is asserted in this context that the germ-line gene "therapy" - to the extent that it could be applied successfully in the future - would make an entirely new quality of positive eugenics possible, because with it eugenics need not only be carried out by means of the selection of the parents who engage in reproduction, but can instead be effected through direct intervention in the genetic constitution of the progeny.
- I dicuss here only the German history of eugenics, which however does not mean that eugenics can be reduced to this: there were laws in force in almost all US federal states until the 1930s which made the sterilisation of the psychologically ill, criminals and the homeless compulsory. As criticism arose, the eugenic policies of the 30s were stopped in most states (Reich 1995). Research policy however, in particular that of the Rockefeller pragramme, continued nevertheless to pursue eugenic ideals (Kay 1993).
- With the stopping of the T4-Action in 1941, the mass killing of the sick and handicapped was by no means at an end. It was more or less secretly continued (Schmuhl 1987, p. 220 ff.).
- From an analysis of the TAZ, Jäger et al. 1997, p. 107.
- From an analysis of the Frankfurter Rundschau, Jäger et al. 1997, p. 125.
- It is of course not being maintained that eugenics as a socio-culural phenomenon originally arises because of germ-line gene "therapy", on the contrary. Given the selection of foetuses (prenatal diagnosis) and embryons (preimplantation diagnosis) as a result of gene diagnosis, social pressure to make use of this new technologies are viewed as already existing.
- Power is according to Foucault more exercided than possessed and operates primarily productively (Sawicki 1991, p. 21).
- This is at the latest case when the power relationships are no longer dynamic but instead have hardended into dominance.
"It seems to me one has to distinguish between power relationships as strategic games between freedoms (that is, games in which one group trys to determine the behaviour of another, and the other respond with the attempt not to allow itself to be determined or on their part to determine the behaviour of the first group) and conditions of dominance, that is, what one usually calls power." (Foucault 1993, p. 25).