Public Health-Aspekte neuer humangenetischer Technologien: Die Evaluation des (German Edition)

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The paper concludes with a plead for a renewal of the critique in order to better understand the bio-political matrix of neoliberal society which not only provides risk-oriented programs and policies, but also governs our subjective ways of thinking. In the discourse on the new genetics, disabled people's perspectives have a special weight, especially in Germany. Over the last two decades, the public — in part assisted by application of certain discourse strategies — has gradually become more attentive to and aware of the issue of disability in the context of genetic engineering and reproductive technologies.

At present, it seems that German people with disabilities have been quite successful in the discourse strategies they have applied. In considering disability in the context of new genetics, one must remember that disabled people tend to be characterized rather arbitrarily and are not a clearly defined social group. Consequently, they do not speak with a single voice about the potentials and risks of genetic engineering.

And, of course, positions on crucial issues such as the use of prenatal or preimplantative diagnostics — and abortion — vary from person to person. They tend to vary by gender and parental status and, in the case of people with disabilities, they tend to depend on specific impairment. While opinions thus of course differ, Germans with disabilities are generally inclined to be suspect of genetic engineering.

More than other segments of the German population, disabled people and their organizations are likely to view the new technologies and the experts' promises with a skeptical eye. I should add that this is my impression, not the result of empirical analysis, as representative studies on disabled people's attitudes to reprogenetics and bioethics have not yet been carried out in Germany c. At present, the best way to learn what disabled people think in this country is to consult papers and statements issued by disability organizations and leading authors on disability issues.

For this reason, I will concentrate on such materials in the following. In particular, this paper concentrates on a specific field of the discussion: the argumentation developed by activists of the disability rights movement. Nor do I take into account self-help groups of people with chronic diseases and genetic impairments, as such groups normally focus on a single anomaly, impairment or illness. Instead, I consider sources written by disabled people committed to the cross-disability rights movement.

In the following discussion, a history of nearly twenty years is covered c. Needless to say, one could apply a chronological approach and analyze the historical development — how the discourse started, how it evolved over the years and how certain arguments were advanced, changed, forgotten and rediscovered.

But in this paper special attention is being paid to discursive patterns and regularities which actually show a rough historical structure , and on the main or basic arguments that have been most influential. It was Link who at the end of the nineties developed the concept of so called "normalism" that helps understand the relevance of normalcy and disability in modern societies.

And it was Foucault who in the seventies outlined the concepts of "governmentality" and "bio-power", in which context he pointed out the weight of the statistical conception of normalcy that contrasts distinctly with the juridical and disciplinary norms which earlier forms of sovereign power have employed. He also called attention to a power that governs by freedom, not repression, and which reigns over people by regulating and positioning them, not excluding and institutionalizing them.

I will come back to this last point when in the second part of this paper I discuss the discursive patterns of the German disability discourse on bioethics. In the following, the focus will be laid on the two central arguments that have been put forward by disability rights activists against the new reprogenetics over the last two decades. I call the first of these the "historical argument" and the second the "feminist argument. The historical argument was formulated in the beginning, whereas the feminist viewpoint dominated the discussion during the nineties.

In each case, I first describe the argument by way of taking one typical discursive fragment as example, and then analyze it theoretically with the concept I am now going to explain in more detail. Before turning to the disability discourse, let us first explore the relationship between society and normalcy Waldschmidt, Of course, normalcy and its critique is an issue of constant debate in disability studies; yet it seems to me, as if "the tyranny of the norm" Davis, , p.

Can — one feels compelled to ask — the phenomenon of the normal truly be boiled down to social conformity or individual behavior oriented to dominant norms? Is the omnipresence of "normalcy" which we are witnessing in current society really such a simple fact? When one takes a close look at contemporary societies, especially those belonging to the western hemisphere of the world, it cannot be doubted that they do function in a different way than in former times, for example, than during the 19th century. And this functioning seems to rely a great deal on "normalistic" patterns Link, Significantly, societies, which are dynamic, individualistic and pluralistic, orient themselves less and less to penal laws, sanctions and external conformity, but again and again, to diversity, statistical normalcy and internal self-control.

Social norms have receded into the background. Instead, the normalcy of the majority or average seems to be the putty that holds society together in the face of flexibility requirements, disorientation and atomization. Of course, there are still social norms that we must obey if we do not want to be penalized. And yet in the course of the 20th century statistical normalcy has become a special phenomenon that now, like normativity, aims at influencing human behavior.

In short, with Link , I am claiming that there are now two different types of norms, namely "normative norms" and "normalistic norms. Normative norms orient people to external rules that they must follow or conform to. Controlling mechanisms ensure conformity with social norms; deviation and disobedience are subject to penalties and sanctions. A "normative norm" can also be described as a "point norm," as a regulation that is externally set and prescribed for individuals. In terms of its social function, normativity is aimed at the production of stability and conformity.

Its purpose is to generate conformity, prevent deviation and protect society from upheaval and chaos. On the other hand, normalcy in the narrower sense, i. Normalistic norms confront each person with the question: who or how am I, or how do I behave, in comparison with others? This question refers to regular behavior rather than to rule-conforming behavior. Normalcy in this modern sense means the experience that social behavior or human characteristics that are seen as customary and that are statistically documented can become guidelines and standards.


The conformity demanded by normalistic norms is not conformity with external rules; it is conformity with other people. Statistical normalcy, as an ordering category, implies the ongoing production of a mean or an average, i. In contrast to the "normative norm," the "normalistic norm" is a "range norm," a spectrum grouped around an average. While the normalistic norm also has external power over some people, all people are continually involved in its formation.

Normalistic norms, in contrast to normativity, are less static and less oriented to stability; they are based on change and dynamics.


A de novo gain-of-function mutation in SCN11A causes loss of pain perception. Neue Publikationen versuchen eine vorsichtige Antwort. Epilepsy Res Mol Cell Endocrinol , Inclusion criteria comprised an overall good preservation of the skeletal material, no pathologies on the upper limbs, and an estimated age between 6 and 60 years. Edited Volumes Schneider, I. GfH , Berufsverband Deutscher Humangenetiker e.

In addition, since they are supported by statistics, they exist only in highly data-oriented societies. In short, these days we find ourselves living in a normalization society. This normalization society no longer exerts repressive forces on us in the narrow sense. Instead, by way of normalistic norms it "solely" calls on us to orient our behavior to that which the majority demands of us; only in this way does it discipline.

Perhaps we no longer even notice the subtle, dominating character of the normalization society. Completely voluntarily, in line with ideals of autonomy and self-determination, we orient ourselves to the middle of society, to average norms. We want to live the way other people do; most importantly, we want to be "normal. By no means do we want to be permanently localized at a negative pole. In my view, the normalization society has become so influential, especially over the past two decades, because it has been able to redefine the concept of normalcy and to enforce it in social practice via discourse, strategic procedures and identity policies.

Protonormalistic normalization strategies can be characterized as follows: They are oriented to normativity, build on the strict separation between the normal and the pathological and permanently ostracize all that is deviant. Protonormalistic procedures function wherever disabled people are isolated and institutionalized, wherever the homeless are police-ejected from public facilities, wherever asylum seekers are interned far from society, wherever homosexuality is seen as a sin and slower learning pupils are considered naturally dumb.

Flexible normalization strategies, on the other hand, are gentler and more permeable. Flexible normalistic procedures begin with the ideal of a "well-mixed" distribution of people within the social environment, a distribution that can always change.

  1. The Holiday.
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  3. Epigenetics.

They follow the assumption that people reach the periphery by chance, that they can leave boundary areas or the realm of the abnormal again and return to the center of society. Flexible normalism also separates the normal from the abnormal, but its separation is only temporarily valid and can always be redrawn. It does not constrict the normal spectrum; but permits it to be expanded out to the boundaries if necessary. The flexible-normalistic field contains a continuity of "normalities" and movable normalcy boundaries.


For example, flexible normalism permits cognitively disabled people, who have been ostracized for centuries, to move into normal apartments situated in normal communities. It permits homosexuals, long stigmatized, to maintain normal, open relationships. It provides special counseling and therapy programs that help drug addicts to re-integrate themselves into society. But let us be cautious. The tendency toward flexible normalization is not simply positive for it does not eliminate all ostracizing categories, all mechanisms that divide people into hierarchical groups. Graphically, this mechanism can be described as follows: in expanding, in moving outward toward abnormalcy, the band that binds the normal center with its boundary zones must not break.

Any danger that the entire normal field could dissolve would spark a backlash, a return to strategies that emphasize narrow normalcy zones and fixed boundaries. One example of such a recourse to normativity and its pertinent sanction options is provided by the present worldwide "war on terrorism" in which the "zero tolerance" policy for persons suspected of being involved in terrorist acts clearly outweighs liberal values. In other words, the normalizing society is tolerant and accepts many escapades, but normalcy boundaries continue to exist and may not be heedlessly crossed.

A look around today's normalization society reveals that normalistic norms play important roles in many areas. For example, normalcy has become the decisive orientation point in disability policies, rehabilitation programs and special education concepts Waldschmidt, , a. In Germany some years ago, in , a publicity campaign was carried out in support of equal status for people with disabilities.

In a major poster campaign, an alliance of the most important associations for the disabled, working under the name "Equal Rights Campaign" "Aktion Grundgesetz" , called for the recognition of disability as a normal mode of life. The campaign comprised a number of slogans that all utilized the concept of the normal:. Why not here as well? A closer look at these pithy formulations reveals that they contain different concepts of normalcy.

For example, the question, "do you really think you're normal? It assumes that no one really wants to be just normal, as average as the man or woman on the street. It equates normalcy with the bourgeoisie and emphasizes the joys of eccentricity. On the other hand, the claim, "being cognitively disabled is also normal," is oriented to a positive concept of normalcy and claims this concept for cognitively disabled people. It assumes that cognitively disabled people are in the minority but are not unusual, and thus are normal people.

This slogan also seems to assume that normalcy is something desirable, something that should also be possible for people with cognitive disabilities. This view could also be formulated in ways such as "people with learning difficulties are people like us. The disabled associations' campaign obviously saw no problem in simultaneously propagating different perceptions of the normal. How was this possible? Clearly, the different normalcy concepts involved are based on basic assumptions that are implicit in flexible normalism.

Prof. Dr. Ingrid Schneider

All slogans imply that normalcy provides choices and room for change. Another common feature is the assumption that each society is free to define normalcy. The line between normalcy and handicap is no longer rigid or naturally given; it is shifting and variable and may even be unnecessary. In today's society of flexible normalization, normalcy is no longer considered an immutable, permanent fact. It is instead seen as a challenge, as something that can be designed and produced, as a "landscape" that changes with time.

It is no longer an external constraint that society imposes on its members — it is formed and shaped by the acting subjects themselves. In other words, policies for the disabled clearly use a normalcy concept that, according to Link , could be termed "flexible-normalistic.

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In the second part of this paper I will turn to the bio-political discourse and examine the positions that were developed by people with disabilities in this context. And of course, the question of normalcy will guide me again: Does the issue of flexible normalization play any role in this discourse? Female activists have figured especially prominently in this discourse, and thus feminist arguments have played, and continue to play, a significant role in it. However, the debate began not with the formulation of a feminist position, but with a look back at the blackest period of German history — national socialism, to be precise: Nazi eugenics and racial hygiene.

It was definitively not a coincidence that the first argument put forward by disability activists was a historical one.

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It was first published in by the authors themselves, Udo Sierck and Nati Radtke, a man and a woman who were both disabled and involved in the German disability rights movement. In the years that followed, the book met with a remarkable reception and went into several editions. In , the fifth edition was published by a left-leaning publisher known in Germany for its policy of publishing critical texts on medicine, public health and nursing. In their book, Sierck and Radtke focus on the history of human genetics counseling. They seek to identify the traditions which National-Socialist racial hygiene and human genetics have in common.

Their approach is centered on these questions: Is there a relationship or a so-called "continuity" between National-Socialist racial hygiene and post-war human genetics, or, in other words, are there links between the old, authoritarian eugenics and the new, liberal eugenics? Needless to say, these questions are answered in the affirmative. In their book, which is one of the first sources of the disability rights discourse on the new genetics, Sierck and Radtke posit a close continuity between eugenics, racial hygiene and human genetics.

Their criticism can be summarized as follows:. First, both eugenics and human genetics are concerned with the same object, namely research into genetic inheritance and hereditary disease. Both scientific disciplines attempt to find out the causes and identify the symptoms of congenital impairments and aberrancies. In the past, techniques were based on Mendel's genetic theory; today, research is carried out on the level of chromosomes, gene products, and molecular structures.

Secondly, there is a strong continuity on the biographical level. The same generation which was actively involved in the racial hygiene program built up human genetics in post-war Germany. That earlier generation of scientists had no qualms about what it had done during the Third Reich, and it felt it had instead been misused by the Nazis. Without a second thought, then, the old guard made use of their former scientific works to formulate a modern approach.

Thirdly, human genetics and eugenics share the same paradigm, which is the principle of selection. The scientific intention, in former times and today, is to systematically apply findings with a view to preventing hereditary disease and eradicating their causes. The purpose, then and now, is to reduce the number of so-called unhealthy genes and to pass on healthy genes to the next generation.

And the principle of selection is still all-important. In the past, human beings were selected and classified according to socially justified quality characteristics; today, unborn life is so selected and classified. In short, both eugenics and human genetics apply "quality" criteria to human life. Fourthly, both eugenics and human genetics are part and parcel of population policy. Their underlying basis is the fear that the population will decline in numbers and deteriorate in quality, as the number of overall births continue to decline, as medical science progresses and as ecological damage and industrial hazards increase.

For these reasons, cost-benefit-analyses are undertaken to characterize certain minority groups as burdens on the welfare system. For the same reasons, bans on childbearing are enacted for some populations and obligations to have children for others are imposed.

Bans on childbearing affect disabled women, whereas incentives to have children are directed at women without disabilities. Furthermore, the population approach inherent in human genetics requires the systematic recording of genetic data in which masses of people are being registered and thus controlled. In an article written in Sierck concludes:. For years, this pattern of argumentation has dominated disabled people's discussion on human genetics in Germany.

The old eugenics and today's new preventive genetic strategies have been seen as largely equivalent. Today's human genetic counseling and prenatal diagnostics have been regarded as disciplinary technologies operated by a dominant cartel of science, medicine, industry and the state.

The assumption has been that the racial hygiene concept was transformed directly into post-war policies, and that human genetics is being used to achieve population policy targets. The scientific discipline has been considered as an instrument of coercion, executed by "those at the top" against those "at the bottom," and as an anti-disability strategy for controlling, disciplining and standardizing the deviant. This "repression model," as I would like to call it with reference to Foucault , although very successful within the discussion, was already an anachronism at the time it was formulated.

It relied on an obsolete political theory, as it did not take into account that in post-war Germany, as in other countries, democratization and liberalization had fundamentally changed relationships between the state, society and the individual. Today's new eugenics relies on individual autonomy and self-responsibility.

Nowadays, human geneticists act not on their own authority, but on the authority and wishes of their clients. Genetic selection is based on the seemingly objective concept of "risk" and is practiced with the active participation of the individuals concerned — after they have been duly informed and have given their consent Waldschmidt, , Eugenics has shed its authoritarian roots and developed a democratic and individualistic approach. Coercion and pressure, open repression and control are no longer applied; they are, in fact, no longer necessary.

The state and society no longer need to urge people to do their eugenic duty. People obey their individual genetic risks; they are voluntarily adhering to eugenic reasoning, without expressly being told to do so. The central issue thus is not one of a specific governmental policy, but of a eugenic matrix that is gradually invading all areas of everyday life.

The new eugenics has its own dynamics, as it is supported and practiced by the woman and the man on the street, and is not enforced by the police and the official authorities. As a result, genetic selection appears to be something "quite normal. Today, it is granted to individuals in accordance with their wishes, and it seems to have become part and parcel of modern identity policies. In short, we are witnessing an "eugenics of risk" Lemke, , p.

Should we worry about the new eugenics, rather than the old? Perhaps the big problem is not human genetics as a science, but the participation of so many people in the search for genetic perfection and normalcy in our liberal societies. Why did genetic testing during pregnancy become routine practice so quickly — not only in Germany, but all over the world?

What makes a great number of women want to use genetic diagnostics and reproductive technologies despite the health hazards for themselves and their babies? Why are so many women prepared to accept invasive diagnostic techniques during pregnancy and to submit to potentially dangerous surgeries, such as amniocentesis and chorion villi sampling, and risk a miscarriage only to ensure that their embryo or fetus is not disabled?

Sensitized by what they had experienced at the hands of medicine and gynecology, disabled women came to see human genetic diagnostics not as a way to achieve greater women's self-determination, but as an instrument of control over women and their bodies. From the disabled women's perspective, genetic diagnostics is not only "ableist," but "anti-women," too.

The main problem for the disabled feminist position, however, has been that the issue of prenatal genetic selection is closely tied up with the highly emotionalized issue of abortion. Women with disabilities finally brought this issue forward for debate in the s. The position of disabled women within the abortion discourse can be described as "sitting on all fences. On the other hand, they criticize a politically naive feminist self-determination concept that accepts dominating ideological norms, such as the expectation that women should bear healthy children.

At the same time, disabled women also have to make clear that the solution of the eugenic dilemma cannot lie in obliging conservative antiabortionists by forbidding abortion in general or even installing a women's "duty to bear disabled children" — a demand brought forward by some male disability rights activists at a heated stage of the discussion see for a critique Degener, The authors also formulated the position of the German disabled women's movement, a position that is inspired by both the feminist disability perspectives. They deny that the use of genetic diagnostics enhances female self-determination ibid.

From their point of view, decisions for prenatal diagnostics are not part of reproductive autonomy. The authors thus call for a new look at the old feminist slogan "the private is the political. Prenatal diagnostics is confronting women with the eugenic dilemma, a dilemma which is not easy to escape. The genetic quality assessment of the fetus turns a heartily welcomed pregnancy into an undesirable one.

In the contrasting case of a nonselective abortion for social or personal grounds, the pregnant woman may also see her fetus as a burden, as something she wants to get rid of.

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In such cases, the fetus is seen as a burden not because of its own fetal characteristics, but because of the woman's personal situation and living conditions. The fetus as such is unwanted, and his or her genetic traits do not play any role, whereas in the case of a selective abortion the woman's desire to have a "normal," non-disabled child is crucial for the decision to terminate the pregnancy.

Of course, the woman's decision against a disabled child can be attributed to social constraints and pressures, but nevertheless, when one looks for the logic of genetic diagnostics during pregnancy, one has to admit that the decision against a fetus on the ground of a disability has a qualitative dimension — in fact, a eugenic dimension.

REconciling sCience, Innovation and Precaution through the Engagement of Stakeholders

Semester laut User- schnittliche kumulative Nutzungsdauer der Gesamtgrup- tracking kaum genutzt wurde Daten nicht gezeigt. Eine pe. Bei den ten. Abbildung 2 stellt die Ergebnisse der Evaluation aus Studierenden der Humanmedizin im vorklinischen Studi- vier Semestern Humanmedizin im klinischen Studienab- enabschnitt und der Studierenden der Humanbiologie schnitt dar. Die Unterschiede in Nutzungsdau- anderer Studien widerspiegelt [1], [5]. Unserer Kenntnis nach gibt es den aus dem Usertracking ermittelten Daten berechnet zumindest im deutschsprachigen Raum kein vergleichba- werden.

Wie eine andere Studie zeigte [4], korrelieren res Projekt im Bereich Humangenetik. Interessenkonflikt 7. Addressing the issue of e-learning and online genetics for health professionals. Nurs Health Sci. DOI: Rost B, Koolman J. Evaluation von multidmedialen e-Lernkursen in Zusammenhang mit diesem Artikel haben. Med Gen. Berlin: uni-edition; How to Successfully Implement E-learning Eingereicht: Acad Radiol. Rostock: DeLFI 3. Deutsche e-Learning Copyright Fachtagung Informatik, September The orginal German version starts at p. It is currently organized in five e-learning modules: cytogen- etics, chromosomal aberrations, formal genetics, fundamentals of mo- Barbara Fritz1 lecular diagnostics, and congenital abnormalities and syndromes.

These Aurelia Lara Fuchs3 are basic courses intended to do the educational groundwork, which Alexander will enable academic teachers to concentrate on more sophisticated topics during their lectures. The group consists of science students human biology and medical students in the preclinical or the clinical period, respectively. Dekanat, Marburg, Conclusion: Our e-learning-model is broadly accepted among students Deutschland with different levels of knowledge at the Faculty of Medicine in Marburg.

Together vice provider of comprehensive technology and content with ist predecessors k-MED has been continuously for authors and learners [1]. The platform is based upon sponsored by the Ministry of Science and Arts of the state the sophisticated open source learning management of Hessia from until termination of funding in It aimed at im- proving classical learning scenarios by the means of novel information and communication technologies. ILIAS is more and more applied at universities, other education- al institutions, business establishment and administrative facilities such as the German Federal Employment Office.

Currently , k-MED offers over different e- learning courses or modules being accessed by approx- imately At the medical faculty of the university of Marburg and — to an increasing extent — the university of Giessen the online material is provided within a blen- ded learning scenario supplementing the traditional study concept.

On the other hand teaching staff is being challenged in many ways. Additional lectures and seminars had to be integ- rated into the curriculum, but personnel was rather re- duced. Furthermore, they shall com- pensate deficits in basic knowledge of human genetics. Figure 1: Example of an inteactive e-learning module: Making This rationale is supported by a study about the attitude of an online karyogram of medical students towards human genome research at the university of Leipzig. Accordingly, human genetics has These are basic courses intended to supplement the been considered as relevant, and an increasing integra- traditional learning scenario.

During the academic year tion of this subject into the medical curriculum has been winter and summer term about — students at required the faculty of medicin attend courses in human genetics. Our material may not only provide a means to en- The aforementioned e-learning modules are integrated hance learning efficacy, but interactions between teachers in the canonical curriculum within the framework of a and students may also become more intensive using an new blended learning scenario.

The users comprise about online communication forum, a central storage place for 50 students of human biology, about medical stu- scripts, links and course schedules. All students received the e- Methods learning modules in human genetics on an explicitly vol- untary basis see Table 2. This relieves the burden fundamentals of molecular diagnostics, and congenital on teaching staff, because the fundamentals of genetics abnormalities and syndromes see Table 1. Table 2: Integration of the e-learning modules in the curriculum Table 3: Evaluation of the acceptance of the e-learning modules of human genetics at the faculty of medicin at the university by user-tracking of Marburg.

Cumulative use at the faculty of medicine in Marburg. Table 4: Evaluation of the acceptance of the e-learning modules by user-tracking. Use by medical students in the clinical period and students of In principle, all groups receive the same e-learning mod- human biology. Medical students are offered the same modules to perform follow-up course work for their practical training in biology and to prepare for the exam at the end of the 1st semester. Medical students in the second clinical period employ the modules to recapitu- late basic knowledge in human genetics from the 1st semester and to exercise themselves in clinical genetics.

The use until summer term 07 and Outstanding figures are answering forced choice questions — one correct response marked in grey. This is supplemented by several inter- spectively active test items with different levels of difficulty, where Access is defined as login into a distinct e-learning module the learners can draw online karyograms applying the e. Due to technical drag-and-drop technique. If the chosen chromosome is problems — e. For that reason the online user tracking data is presented mainly with respect to the To be surveyed on user friendliness and acceptance user- collective group in a cumulative way see Table 4.

A time-analysis of user tracking data — to detect and 4 and also questionnaires see Figure 2 were eval- possible peaks in the degree of utilisation for example — uated. Figure 2: Evaluation of k-MED learning modules in the clinical study period. To that end we used a four-step scale for an- ics until spring term see Table 3 and 4. On an swers bad, not so good, good, very good. Table 3 and 4 duction. Due to limited personal ressources at the collective group. An evaluation of acceptance Figure 2 presents a survey of the evaluation during four was not carried out with medical students in the preclin- semesters in the clinical study period.

To our knowledge there is — at least in the German Discussion and Conclusion speaking countries - no similar project for teaching the basics in human genetics.