Biopolitik

Mit „Biopolitik“ bezeichnen wir im Folgenden die seit gut zwei Jahrzehnten anhaltende gesellschaftliche Thematisierung und Regulierung der Anwendung moderner Naturwissenschaft und Technik auf den Menschen.¹ Im Visier dieser Politik stehen vor allem die Fortpflanzungsmedizin und die Humangenetik; zunehmend aber auch die Hirnforschung, ferner ebenso das wissenschaftlich und technisch eher unspektakuläre Gebiet der kosmetischen Chirurgie.

Over the past 25 years, the rapid development of biochemical and DNA-based tests for human genetic conditions have engendered a technological revolution in medical diagnosis. With the increased ability to identify genetic differences, there is also concern that genetic testing may be used to discriminate against individuals and social groups. This article presents the results of the few available empirical studies on genetic discrimination, and it sums up the legal regulations that address this problem in different countries and supranational organizations. A subsequent part of the contribution centers on cases of exclusion and stigmatization that have been reported in Germany by so-called persons at risk for Huntington’s Disease, a late onset genetic disorder. The article concludes by pointing out some limitations that characterize the present scientific engagement with genetic discrimination and the socio-political discussion of the problem.

Even before genetic testing actually became available, fear that “genetic discrimination” would be practiced by employers and insurers was expressed, and calls were made for legislation to prevent this. However, there is no generally accepted definition of the term “genetic discrimination”. It is used differently by different persons; how it is used depends primarily on whose interests are at stake. Discrimination should be defined as unjustified differentiation. As genetic data may be used to predict morbidity and mortality, and thus expected costs in life and health insurance, the use of genetic testing results by private insurers in the calculation of premiums must be considered as justified. Scrutiny of the literature reveals that there are surprisingly few proven cases of genetic discrimination by insurance companies. On the other hand, we calculate the costs of adverse selection which would occur if the use of genetic tests were legally prohibited. We conclude that regulations based on codes of conduct with limits on insurance sums for which genetic test results are not used (like those in Germany or the United Kingdom) may enable affected persons to get insurance and, at the same time, allow insurers to limit adverse selection.

Scenarios predicting that prenatal diagnostics and selective abortion would underamine the recognition and right to life of the disabled increasingly find public attention and political resonance. The protection of persons with disabilities is an uncontested political goal and a constitutional mandate that must not be jeopardized. However, it is precisely because this protection has such a high and unambiguous value in our society, that it is unlikely that it would be derailed by the practice of prenatal selection. In fact, an analysis of empirical data reveals that there is no serious indication that the feared scenario could become a realistic one. The proliferation of prenatal diagnostics and selective abortion reflects the fact that parents reject disability, but not that they reject the disabled. There is nevertheless a clear potential that disabled persons could be deeply offended (stigmatized) by the practice of prenatal selection. However, even disabled persons use prenatal selection to ensure that they will not bear disabled children.

“Genetic discrimination” is a topic which currently attracts legal and ethical attention worldwide. Although only a few (often unclear) cases of genetic discrimination have been discussed up to now, many countries nonetheless have felt obliged to react with regulatory measures and anti-discrimination laws. The basic problem is that it is still unclear what the precise term “genetic discrimination” really means and how regulation in this area is to be justified and applied effectively. This article attempts to answer these questions by examining the current legal situation in different countries in light of the fundamental ethical implications of the subject. The authors believe that there is no need for special legislation vis-à-vis “genetic discrimination” in German law, because the framework of existing laws is entirely sufficient.

The disease-centered goals of medicine and its ethos appear to be endangered by the emergence of new possibilities to use medical techniques “beyond therapy” — that is, to improve the appearance, capacities, or longevity of healthy persons. This paper discusses some normative aspects of such “enhancement”. First, it questions the possibility of a clear-cut “therapy-enhancement distinction”; secondly, it argues that even genuine enhancement, does not necessarily fall under the verdict of traditional physicians’ role and ethics; and third, should some enhancement procedures turn out to be effective and safe, people will still need professionals, physicians, or others to guarantee quality standards, risk monitoring, and individual information about the application of such procedures. Finally, whether or not enhancement is to be viewed as ethically acceptable will have to be decided by its consequences for individual and social flourishing and fairness.

Since the introduction of prenatal diagnosis (PD) more than three decades ago, requests for PD for sex selection — in the absence of a sex-linked genetic condition — have become the subject of controversial discussion. Is selecting sex a logical and tolerable extension of a couple’s right to control the number and spacing of their offspring, or is it a first step toward the selection of preferred body traits? Is sex selection straining the limits of autonomy and are laws against sex selection needed? In nations with a deep-rooted preference for males, sex-selection — whether pre- or postnatal — poses a social threat, as steadily declining sex ratios of women to men in China and India indicate. In societies with equal preferences for boys and girls sex selection does not play a discernible role in PD and cannot be regarded as a social problem that needs to be addressed by restrictive laws. Empirical data on geneticists’ attitudes towards sex selection indicate that, although sex selection is a particularly troublesome issue for most geneticists, a substantial number, especially in Western countries, would either be willing to perform PD or to refer for sex selection on individually based grounds. Geneticists will probably not act as strict gatekeepers to inhibit the use of PD for sex selection even if they disapprove of it.

This article deals with the issue of public justification of legal norms in the field of human genetics. It starts from the key idea in contemporary liberal-democratic political theory that within the realm of reasonable pluralism (Rawls), the neutral state, if it is democratically constituted and committed to the inclusion of competing world views, must refrain from taking sides. In German legal thinking there is the widespread thesis that the moral and legal notion of human dignity should be understood in the sense of “dignity of the human species”, implying individual and collective duties to refrain from interventions in the human genome. It is argued that this approach has severe illiberal implications, threatens the concept of human dignity and individual human rights, and is, as a metaphysical and/or religious interpretation of what it means to be a human being, incompatible with the principles of law-making in the liberal constitutional state. Further, the article provides a critical analysis of Jürgen Habermas’ attempt to moralize human nature by means of an “ethics of the species”, and his reading of “liberal eugenics” which, according to Habermas, endangers our ethical self-understanding and undermines the essentially symmetrical relations between free and equal human beings.

Using Habermas’ reflections on biogenetic techniques as an example, the paper argues that critiques of reproductive cloning tend to overrate the formative power of genes and underrate the subjective contribution to the constitution of identity. Unintentionally this strengthens a deterministic concept of human beings as suggested in (popularized versions of) sociobiology, behavioral genetics, and brain research. Empirical data are presented to show that uniqueness and autonomy — the core aspects of personal identity — cannot be experienced from the third-person perspective of an objective observer, but only from the first-person participant’s perspective. The feeling of uniqueness does not depend on knowing that one’s genes are matchless; the experience of autonomy is not endangered by knowing that one’s genes have been manipulated. Instead, both derive from willingly affirmed commitments to values or ideals.