Biomedicine and Bioethics

The Human Being as Optimisation Project

AutorIn: Michael Wunder
Themenbereiche: Eugenik
Textsorte: Vortrag
Releaseinfo: Speech in the board meeting of the "Internationalen Spina bifida Vereinigung IFHSB" in Hamburg, January 23th 1999, published in : AsbH-Brief 1/99. http://www.asbh.de/
Copyright: © Michael Wunder 1999

Biomedicine and Bioethics

"...if we could make better human beings by knowing how to add genes, why shouldn't we do it?" James Watson, the famous co-discoverer of the DNS asked at the symposium "Engineering the Human Germline" at the University of Los Angeles in May 1998 (Summary Report 1998: 16).

Mr Seidenstücker asked me to report on the international and particularly the German discussion about biomedicine and bioethics. One of the main differences seems to me the following: The discussion in the United States about genetic engineering of the human being has escalated much more than in Germany, and much more than in Europe generally speaking. So has the reducing of the human being to his biological design. The perfect model of the contemporary biomedicine, that is the "genetic enhancement engineering" is not shamefully concealed as it is in Germany and in most of the European countries, but openly discussed.Whereas here in Germany the question of whether genetic engineering should be done is debated on, in the United States only the question of How and When is considered.

Another difference: In Germany biomedicine as well as bioethics is being criticised openly. More than 2.5 million signatures have been collected against the Bioethics Convention of the European Council, particularly against research for the benefit of others on people without the capacity to consent. Hereby the criticism relates explicitly to the historical experiences with medicine during the era of the National Socialism, particularly to the Nuremberg Code of 1947. This kind of criticism is exceptionally powerful. After all Germany has not signed the Convention on Human Rights and Biomedicine of the Council of Europe nor ratified it up to now. At the same time this historic relation of criticism is vehemently disapproved of by adherents of biomedicine.

At a Los Angeles Symposium an opposition to any political initiative which might hinder the development of biomedicine was demanded. This aim and the relating genetic fixing of medicine will determine the future debates in Germany as well as in other European countries where criticism arises.

My report is structured as follows:

  1. In what stages does biomedicine plan its future development? - A view on the future of biomedicine.

  2. What strategic significance do the international regulation attempts have against this background, that is the "Convention on Human Rights and Biomedicine" of the Council of Europe and the "Declaration on Human Genome and Human Rights" of the UNESCO?

  3. What kind of role does bioethics fulfil? What are its basic ideas? In what way does bioethics contribute to the accomplishment of biomedicine aims?

  4. The historic dimension of criticism with the permission of research on people not able to consent and the Nuremberg Code as examples

  5. Conclusions

A View on the Future of Biomedicine and Bioethics

At the beginning I would like to refer to the brief and very interesting paper presented by an interdisciplinary working group of geneticians, biochemists, theologians and medical doctors of the University of Munich. The text deals step by step with the predictable biotechnical developments and the relating ethical problems (Winnacker et al.: 1997).

The members of the working group strictly dissociate themselves from "a general turn-back of the culture of science" (Winnacker et al: 13). On the contrary: "The negation of the scientific and technical conditions and possibilities of the leading of life is irresponsible nor are there any 'good reasons' for it."

When asked whether interventions of genetic technology into nature can be equated with an intervention into Creation they indicate that it is the very knowledge of evolution in nature that is the prerequisite of genetic technology. "Therefore", they say "using this knowledge to design and practice human culture is not at all incompatible with the specific position of the human being in nature as Creation. However, this cannot happen without considering the special responsibility of the human being, which can never be replaced by whatever imagined natural necessity or even by any inevitable evolutionary processes" (Winnacker et al.: 14).

This brief paper thus meets the requirement of biomedicine as modern natural science to focus on its own future development with the aim of rendering the outlined developments of scientific utopias planable and more calculable by considering possible social and institutional opposition.

The danger of such bio-technical considerations focused on the future could lie in a slow desensitisation by always repeating the already vigorous breaking of taboos - a danger, by the way, my report could also succumb to. Something that is considered becomes normal. Since at the same time the "Ethical Escalation Model" depicts a comprising and realistic model of the future development of biomedicine, I would like to present it and also add the legal situations (according to German law only) as well as references to the Bioethics Convention to the respective stages.

Stage 1:

Genetic Engineering of Drugs in the Sense of Substitutional Therapy

(This stage has already been reached)

Method: missing proteins are extracted from animals or blood conserves by means of genetic engineering and given as drugs

Examples: diabetes and bleeder's disease

Ethical perspective: as previous development and taking of drugs

Legal situation in Germany: covered by Drug Act AMG

Stage 2:

Somatic Genetic Therapy to Treat Genetic Diseases

Method: a defective gene is replaced by an intact one, which is injected into the body cells (not germ cells)

Problem: the transition into the germ cells cannot be excluded, since the means of transport (viruses, fat globules) do not yet allow this

Examples: cystic fibrosis/mucoviscidosis, immune stimulation in cancer patients

Ethical perspective: comparable to surgical interventions, however, with unclear level of intervention, since effects on germ cells cannot be excluded.

Legal situation in Germany: the application is covered by the consent of the patient as well as by law practice. The development of the methods is impeded by prohibiting the necessary in vitro embryo research by means of the Embryo Protection Act (EmbSchG).

Bioethics Convention: permission of genetic therapy (Article 13) as well as permission of in vitro embryo research (Article 18)

Stage 3:

Somatic Genetic Therapy to Treat Genetic Diseases of Unborn Children

The Pre-Implantation Diagnosis PID which should lead to Pre-Implantation Therapy PIT

Problem: due to the omnipotence of embryonic cells the germline is also quite probably regularly affected

Ethical perspective: the level of intervention exceeds the parents' right to consent. However, according to the authors of the "Escalation Model": A safe therapy could play a determining role as to the course of decision" (Winnacker et al.: 1997: 34). That means: if the pre-implantation therapy is successful, it will find acceptance.

Legal situation in Germany: not covered, since the development and the application of PID is prohibited by the Embryo Protection Act

Bioethics Convention: permission of predictive genetic testing (Article 12) in combination with permission of PID to select sex related diseases of in-vitro-fertilisation (Article 14) as well as permission of in-vitro embryo research (Article 18)

Stage 4:

Germline Therapy to Treat Hereditary Defects Causing Diseases

Method: a defective gene in the germ cells is replaced by an intact gene

Example: BRCA-1-Gene (breast cancer)

Ethical perspective: the level of intervention exceeds the right to consent of the individual of today, since it is the descendants who are affected

Legal situation in Germany: not permitted, however, there is no explicit legal basis for a non-application, whereas the development of the procedure means violation of the Embryo Protection Act

Bioethics Convention: still excludes the application (Article 13), however, does permit preparing research (point 91 of the explanatory report of the Convention). The application could probably be covered by the adaptation in 5-year's stages (Article 32-4) after having developed the technique.

Stage 5:

Germline Therapy with Introduction of New Genes to Prevent Diseases

Genetic vaccination

Examples: MxA-Gene from transgenic mice to prevent influenza, HIV-resistance gene of baboons to treat HIV

Ethical perspective: the level of intervention cannot be estimated, the danger for the whole population is unclear, since it is unknown how the insertion of an foreign gene affects the genome, e.g. the existing protective functions; danger of a chain reaction

Legal situation in Germany: see stage 4

Bioethics Convention: see stage 4

Stage 6

Germline Therapy as Prevention Against Risk Factors or Deviation from Norm

Examples: obesity, height

Ethical perspective: see stages 4 & 5; furthermore unclear concept of disease, danger of human beings according to norm

Legal situation in Germany: see stage 4

Bioethics Convention: see stage 4

Stage 7:

Germline Therapy to Change the Human Species

Examples: intelligence, aggression

Ethical perspective: see all other stages; and who determines which evolutionary caused development stage can be ignored?

Legal situation in Germany: see stage 4

Bioethics Convention: see stage 4

In my opinion one more stage should be attached to this Escalation Model, stage 0, which is already integrated into our everyday life:

Genetic Registration

Application: selection of germ cells and embryos, selective distribution of resources

Examples: prenatal diagnosis, working place qualification diagnosis, insurance companies' admittance diagnosis

Ethical perspective: is subject to the consent of the parents or the person concerned

Problem: is voluntariness still guaranteed if genetic testing has become a social norm or the prerequisite for the distribution of resources?

Legal situation in Germany: covered by legal situation (e.g. Embryo Protection Act) as well as by legal practice.

The Escalation Is Pre-programmed

The above model makes the danger of escalation of biomedicine clear in quite a few respects. As to the level of intervention it shows the threatening development of individual treatment to a treatment influencing all descendants, and as to the level of medical action it indicates the practice of healing diseases and the prevention of disabilities to the breeding of human beings according to norm. As to the level of concept of disease the model clearly demonstrates the spreading of apparently somatic diseases to disabilities, behavioural deviations and last to individual characteristics, and thus to the threatening biologisation of the social issue by a future genetically fixed medicine.

Against the historic background this predicted development could be described as the development of a "negative eugenics" (genetic examination and selection) to a "positive eugenics" (healing of society, the human species, formerly the 'Volkskörper'). The danger of this kind of ethics as part of the escalation lies in a stepwise transition from a medicine determined by individual ethics towards a medicine determined by collective ethics.

To this fundamental change of view the authors themselves seem to already succumb. By indicating a possible success which would justify a germline therapy they no longer follow the in Europe still broadly prevailing rejective attitude. "It is not the effect on a undefinable number of descendants which speaks against germline therapy", so they say, "but the not existing consensus on the mandate of the medical profession" (Winnacker et al.: 1997: 41). Here, you could add that this consensus could be altered. Only in their final remarks do they mention that science must respect the limits between individual treatment and the treatment of the 'human species' (Winnacker et al.: 1997: 49). However, a fundamental no to influencing the germline is missing. This ambivalence at such a decisive point, however, is in my opinion significant for the threatening future development of medicine and medical ethics even in Germany where positions of fundamentally ethical responsibility are slowly replaced by bioethical oriented moral-cost-benefit-analyses, thus more and more joining the international trend.

The Strategic Meaning of International Regulation Attempts

The "Convention on Human Rights and Biomedicine" of the Council of Europe as well as the "Declaration on Human Genome and Human Rights" of the UNESCO were presented to the public to introduce international ethical minimum standards for the development of biomedicine. Against the background of the above mentioned predictable biomedical developments and the necessary legal steps the international regulation attempts can barely be judged as steps of restriction and ethical control, but as global instruments for the benefit of research and application of biomedicine.

Now to the "Convention on Human Rights and Biomedicine" of the Council of Europe. It has the character of international law and must be obeyed by those countries who ratified it, even if some of the principles can be evaded, see Article 36 of the convention, or even overfulfilled, see Article 27.

In the future development of biomedicine embryo research will take over a strategic role, as outlined before. Not only is it decisive for optimising IVF, but also for the development of genetic diagnosis as well as genetic therapy. Exactly here, the Bioethics Convention paves the way by:

  • permitting the in vitro embryo research without giving any time limits and with the completely vague addition to the "adequate protection' of the embryo (Article 18)

  • partly permitting PID to select sex related diseases in IVF (Article 14), thus paving the way for the general permission of PID and making pre-implantation therapy more and more necessary

  • preparing the application of germline therapy, which is still prohibited (Article 13), the exploration of which, however, is permitted (point 91 of the Explanatory Report of the Convention)

  • adapting the legal general conditions in five year's stages to research (Article 32-4) which leads to the permission of the various forms of germline interventions.

Research on persons unable to consent for the benefit of others is permitted in Article 17.3, provided that there is only a 'minimal risk' and a 'minimal burden', a benefit for the same age group or persons suffering from the same disease, disorder or the same situation and provided that the legal representative gives his consent. Referred to here are minors, persons with intellectual disabilities, mental diseases, brain injuries as well as vegetative state patients. This was the cause of the most vehement protest in Germany as already mentioned.

In contrast to Bioethics Convention of the European Council the UNESCO Declaration on human genome is only meant to be a recommendation for the members. Nevertheless, it has a certain significance, since it can be used world-wide as legitimate basis for the safety of biomedicine.

In this context the following statements are important:

  • the human genome is declared as 'human heritage' - in the final version added by 'in a symbolic sense', which may mean: usable, exploitable, corrigible, but also worth maintaining.

  • somatic genetic therapy and germline intervention are no longer differentiated, the exploration and application of them are made possible, bound only by general references to 'human dignity', otherwise by the respective national law.

  • the permission of research on persons unable to consent (here explicitly of genetic research) is adopted almost word by word from the Bioethics Convention of the European Council.

  • the permission to clone (viable) human beings is only rejected in form of a 'should statement' ('should not be permitted'), the cloning of human cells or embryos which are not used for reproduction but for research, therapy or transplantation is not prohibited.

The visions of biomedicine of procreating human beings to a large extent in

laboratories with the aim of genetically influencing them, of every second surgical

intervention being a transplantation, and of usefully corrections of the human

genome are not at all set bounds to but come closer and closer.

How Does Bioethics Contribute to the Accomplishment of Biomedicine?

Does Bioethics protect us from escalation or is it part of the escalation?

Two basic theories prevail in bioethics[1]:

Bioethics rejects the above a priori set values. It also rejects the inviolability of human life. Human life alone does have no meaning nor value. However, it can acquire both by means of action. Prerequisites for action are characteristics such as self-consciousness, self-control, memory, sense for future and time as well as being able to communicate. Adherents of bioethics claim that this is what makes human life personal with dignity, value and right, the so-called personal human beings. Less means unpersonal without sense and dignity, without value and right, the so-called unpersonal human beings. Thus bioethics denies that human rights are universal.

On the basis of this bioethical value system concepts such as the worthiness and unworthiness of human life are being discussed today (an actually rather old discussion). And this is the philosophical starting point of all devaluation of people with intellectual disabilities, chronical diseases, or other handicaps, briefly incapacitated persons, but also of the dying as cost factors and embryos as objects.

There is still another point where bioethics leaves the fundament of the tradition of human rights. It uses the model of discourse ethics in the naîve and dumb manner of the relativism of all values, which are weighed up in moral-cost-benefit analyses. Some adherents of bioethics even compare human rights' protection guarantees of the individual with other rights such as the freedom of research and what's more, the common right of the majority to health, thus depriving these guarantees of their staunch and unchangeable character.

Discourse ethics is based on the principles of the free consent of participation, the equal rights of all participants, the respect for the freedom of others, that means the basis rights which are inviolable and enable the discourse to get started in the first place. These principles which are particularly disregarded by bioethics and replaced by a dangerous interests-oriented practical ethics which is not consistent with discourse ethics.

"...so as not to halt or hinder arbitrarily the advances of science and technology and so as not to cause any possible harm to human beings." Thus reads a paper justifying the Bioethics Convention of the European Council. "The right of the individual to dignity, together with the fundamental and inviolable rights derived from that dignity, and the right to participate in and benefit from scientific and technological progress and as part of the heritage of mankind." (Palacios 1994: 5).

The Bioethics Committee of the UNESCO even postulates the "imperative of the freedom of research", which they place on a level with the "ethical imperative" which they as working group of the UNESCO represent quasi naturally.

Research for the benefit of others not based on the principle of free consent thus can be bioethically legitimated by collective-ethical spare values such as the benefit of future patients and future generations or the benefit of mankind as a whole. The commitment of medicine to individual ethics is abandoned.

Bioethics is an ethics dominated by exclusion and separation, it is an ethics of a new apartheid and also a service ethics to achieve biomedical research interests. It does not protect us from escalation, but is part of it. It even helps to justify the auto-evolution of the human being. This kind of ethics does not argue against the question of James Watson why we shouldn't make better human beings by adding genes but supports the aim to biomedically optimise the human species.



[1] In English-speaking countries the concept of bioethics is used synonymously for the concept of medical ethics. This does not apply to the German translation which cannot be compared to the various approaches inherent in the US-concept of bioethics. The German concept of 'Bio-Ethik' more or less follows the mainstream of bio-ethical approaches in the United States, Australia and England, which differs considerably from the continental schools of medical ethics and wants to be understood as ethics of the application of bio-sciences to human beings. That is what the above mentioned criticism refers to.

Research on People Unable to Consent Against the Background of History

The criticism in Germany on biomedicine and its bioethics is focused, as already mentioned, on the theme "research on people unable to consent", and not on the strategically much more important issues such genetic testing and embryo research as gate to genetic therapy and germline intervention.

The reason why research on people unable to consent is the focus of public attention and criticism in Germany lies in the fact that here the breach of historical experience becomes particularly significant.

In view of the terrors of Nazi-medicine the Nuremberg Code was phrased by the Nuremberg judges as generally accepted international basis of medicine. It was the fundament of the legal judgement of medical experiments, for which the name Auschwitz stands, as well as of the eugenic crimes, for which the name Hadamar stands[2]. The Nuremberg Code is part of the Nuremberg judgement and thus has the character of International Law.

According to the Nuremberg Code the human being with his individual basic rights guaranteed by the human rights is the focus of medicine, but not medical research, nor scientific progress or social benefit.

The central idea of the Nuremberg Code is the free and informed consent which must be the core of any medical research and according to the generally accepted medical-ethical opinion also the core of any medical treatment of Public Health. The Code requires that each test person before any decision is made has to be completely informed about the kind, the duration, the purpose of the experiment, its methods, means, inconveniences and dangers and that he must also completely understand all this information. People who due to unconsciousness, intellectual disability or due to their state of disease are not able to understand and thus are not able to give their consent are clearly protected against any medical experiment. Only standard treatments and healing attempts can be legitimated by the 'spare' consent of the legal representative for the benefit of the person concerned but not for the benefit of others.

Thus the Nuremberg Code clearly contradicts the Bioethics Convention, but is also completely inconsistent with the bioethical differentiation between unpersonal human beings and personal human beings, to whom only the guarantee of dignity, protection and human rights are applied. So you may not be surprised if the present historic critical treatment of the Nuremberg Code of 1947 is confronted with two major questions:

A. Significance of the Nuremberg Code of 1947?

Does the Code only have a historic or even a generally definite significance?

Or put differently: Can it be only understood out of the historic context? Does it only aim to judge the practices of the Nazi-physicians? Or does it have a general validity for medical research in a civilised world in the first place?

In the United States these questions were discussed particularly in the 60s and 70s. The background was the disclosure of the cancer experiments in the Jewish Chronic Disease Hospital in Brooklyn in 1963, where 22 chronically ill women with intellectual disabilities were injected with cancer cells, and furthermore the disclosure about the Tuskegee-Syphilis-Study during which 400 blacks remained untreated or only apparently treated over decades just to study the process of the disease. The people concerned did not give their consent but thought they were treated. Against this background the German American historian Jay Katz finds it quite understandable that at that time the general validity of the Nuremberg Code was denied in the United States. It was not binding for a democracy but only for a dictatorship

The historic evidence and a view on the Code undeniable speaks for the claim of a general validity.

Telford Taylor, the chief prosecutor of Nuremberg stated in his introduction that the trial was no mere murder trial, since the defendants were physicians having sworn the Hippocratic oath, and thus having become murderers in the execution of their profession. Logically, the judges created with the Nuremberg Code a basis of judgement of crimes which became possible within the bounds of medicine. The judges described the statements of the Code as basic principles "which must be followed so that human experiments comply with moral, ethical and legal principles"(Mitscherlich, Mielke 1960: 273).

Besides, the famous first phrase of the Code and the following detailed explanations as to voluntariness, the test person and the researcher, to the quality of the information in view of the Auschwitz and Hadamar-medicine, would have been meaningless, even almost absurd, had they not been seen as general rules.

B. Character of the Nuremberg Codex

Here, the second question arises: B.Does the Code have a purely legal character to reclaim the human rights' protection of the individual or does it have the character of an ethical code for a humane medicine in the first place?

It is obvious that the informed consent is the core of the Nuremberg Code. "The Principles of Ethics Concerning Experimentation with Human Beings" presented at court in December 1948 by Andrew Ivy were based on the Hippocratic ethics of the responsible Physicians' behaviour. To these principles the judges of Nuremberg deliberately added the irrevocable human rights of the test person: the absolute necessity of the informed consent in point 1 and the right to withdraw from the experiment in point 9. By doing this, however, they did not replace the statements as to the responsible physicians' behaviour, which will be described in point 2-8 as well as in point 10.

The Nuremberg Code of 1947 thus is a really brilliant link between the Hippocratic ethics of physicians' responsibility and human rights. The answer to the question can only be 'yes': the Code is characterised by human rights and lawfulness, and it is an ethical code for a humane medical research.

In this sense the German Section of International Physicians for the Prevention of Nuclear War presented on the 20th August 1997, the 50th anniversary of the pronouncement of the judgement in the Nuremberg Physicians' Trial, the Nuremberg Code of 1997. It is based on the historic experiences and the basic ideas of the old Code of 1947 in order to answer current questions of medicine to the application of bio-sciences to human beings. Ten topics such as medical experiments, reproductive medicine, genetic diagnostics and therapy, transplantation, euthanasia, and distribution of resources are dealt with. The Nuremberg Code thus follows the widespread practice of considering the informed consent to be the principal idea in all fields of Public Health.

In Germany a rather different but important objection against the informed consent is raised: In view of the threatening genetic screening and manipulation of human beings by bio-medicine it is foolish to still rely on the free consent as instrument of correction. Neither are individuals free, they who are supposed to make decisions, nor are they able to really understand the things they should decide on. Rather is there the "legitimisation by procedure" in the sense of Theordor Adorno, that is the approval of an unstoppable inhumane technique by the informed consent developed into its pure form[3].

I don't share this criticism. It is obvious that the principle of informed consent must fail if celebrated as the only moral-ethical authority. Inhumane practices, such as the active euthanasia or interventions in the germline, affecting the lives of future individuals, cannot not be justified by the informed consent of individuals of today (3).

The principle of informed consent does not mean what is practicable should be practiced, only if a person agrees to it. The principle of informed consent is an absolutely necessary prerequisite, but no sufficient predicament for a humane medicine. Thus, the presented Nuremberg Code 1997 contains apart from the personal consent of the test person, naturally further prerequisites, such as the expected benefit for the health of concrete persons or groups, the prevention of unnecessary experiments by applying already existing knowledge and the avoidance of unnecessary pressure of the test person, the publication of the results, the observing of the ethics-commission's decisions and many more.

However, it is alarming that almost all following revisions of the Nuremberg Code did not further describe the additional prerequisites of a socially responsible medicine, but relativise and degrade the principle of informed consent.

The first revision was the Declaration of Helsinki of the World Medical Association of 1964. Here, the scientific progress is the most important thing, whereas the rights of the individual are only seen in relation to it. For the clinical research in the sense of an individual healing attempt the consent should be given by a legal representative in case of incapacity of the person concerned. The explanations as to the non-therapeutic clinical research are ambiguous. On the one hand it is said that it "cannot be undertaken without his free consent". On the other hand it is said: "if he is legally incompetent the consent of the legal representative should be procured" (Annas/Grodin: 1992: 333).

Thus the 'spare' consent of the legal representative is not completely licensed, nor is it excluded. The fundamental statement of the Nuremberg Code is replaced by unclearness and the statements of the World Medical Association of Tokyo (1975), Venice (1983) and Hong Kong (1989) with the tendency to dissolve the principle of informed consent by the regulations of systematic research.

The current revision attempt consists of the suggestion to amend the Declaration of Helsinki, which will be presented by the American Medical Association in 1999. Afterwards no difference should be made between healing attempts and experiments for the benefit of others. In both cases the personal consent will no longer be necessary and can be always replaced by the consent of a legal representative (German Medical Magazine 1998, B-2403).

In this context Jay Katz referred to the draft versions of Helsinki of 1962 according to which the following groups are excluded from any experiments: prisoners of war, civilians, detained as a result of military occupation, prisoners and "persons incapable of giving consent because of age, mental incapacity, or being in a position in which they are incapable of exercising the power of free choice" (Katz 1992:233)

Since Helsinki 1964 this statement corresponding precisely the Nuremberg Code of 1947 was step by step undermined due the discrepancy to the practice of research in the United States and more and more obscured by new wordings. The Bioethics Convention would finally put an end to this long and vehement battle for the benefit of unhindered research by means to an International Law Declaration, as would the World Medical Association by means of a declaration of commitment according to their medical profession. The historic norm of the Nuremberg Code characterised by endless suffering, would definitely be broken.

Against this background the arguments of those aiming at legitimating research on people unable to consent must be measured:

The referring of the adherents of the Convention at 'minimal risks' and 'minimal burden' for the people concerned has no quietening effect whatsoever. Even the taking of blood, which they always mention, is experienced by persons with intellectual disabilities as rather threatening since they are able to only grasp certain situations intuitively[4]. Particularly the concept of 'minimal risk' is in not at all satisfactorily explained and could become a gateway to various research methods. The Explanatory Report already mentions further examples such as procedures replacing x-ray treatments or experiments with vegetative state patients to improve intensive medicine.

Nor does the fact that the legal representative must give his consent thus protecting the rights of the people concerned improve the whole situation. For good reasons neither the parental right nor the German Guardianship Act include such kind of regulation. If the Convention was introduced to German law and the Guardianship Act was changed accordingly, the current understanding of parental custody as well as the legal guardianship would be turned upside down.

Against the background of history references to the well-being of the same patient groups or age groups as well as to the necessary solidarity of people with disabilities, who should "make sacrifices for the benefit of others" (German Department of Justice 1998: 21), are completely obsolete. Solidarity requires voluntariness and agreement. If this is renounced people with intellectual disabilities and everybody who is unable to give his consent will again become a victim to a very dubious progress. For good reasons this kind of sacrifice of the above group is not required.

In this context references to 'higher interests' and the 'well-being of future generations' or the 'human species' follow a dangerous historical continuity. They stand for the dangerous undermining of the individual ethical commitment of medicine in favour of collective ethical commitment.

The concept of informed consent has still another meaning: that is the dialogue between two individuals. On the one hand the researcher has to explain each step of the experiment so that the test person is able to understand it. On the other hand the test person asking questions, tiring but necessary ones, can withdraw from the experiment any time. The concept of informed consent does in any case include the rights to full treatment information, confidentiality, dignity and respect, mentioned in the US-debate on the Bill of Patients' Rights (Annas 1998: 69ff). I believe the informed consent aims at control and the guarantee of the necessity to prove the usefulness of research more than any present ethics commission. If research on people unable to consent was allowed it would mean a further step towards a research without dialogue.



[2] Auschwitz stands for the perversion of rendering medical experiments into a deadly research. Hadamar, where more than 10,000 persons with mental diseases and intellectual disabilities were killed by gas in the course of the "euthanasia"-programme, stands for the gigantomanic mania of a "new society", which has finally been freed from disease and suffering by medicine.

[3] Therefore we object to intervention in the germline in point 6 of the New Nuremberg Code. However, how important it is to cling to the informed consent shows a brief insight into the field of transplantation medicine. Only recently the German Parliament passed, only by a narrow majority, the so-called "extended solution of consent" according to which the relatives of a brain dead person may agree to an explantation in case no personal consent exists. We, however, consider this to be a breach of the informed consent. Since to equate brain death with absolute death is highly controversial, we think that only the personal consent of the person concerned, at the most the consent of a personally appointed reliable person may justify the explantation of an organ. A personal consent may also only justify explantations of organs in order to save lives or eliminate profound suffering and diseases, but not for cosmetical and experimental purposes.

[4] My experiences as psychotherapist with persons with intellectual disabilities and mental diseases indeed do confirm this. Precisely persons with perception and communication problems show a high tendency towards fear and thus very often regard these research methods as invasive interventions into the psyche. Therefore, the methods must not be judged as 'soft', if applied to these people.

Conclusions

The legacy of Nuremberg is the urgently demanded commitment of medicine to individual ethics and the denial of any orientation towards collective ethics. Humane medical research is always bound to benefit concrete persons. "Higher interests", the "well-being of future generations" or of the "human species" do not in any case justify the evading of the protection of the human rights of the individual nor the principle of informed consent, even if it means the slowing down of research.

The touchstone of a humane medicine and a humane medical research is the dealing with people who are not able to speak for themselves nor able to consent The publicly accepted and protected reliability of human rights in medicine and medical research can be measured by the dealing with people not able to consent. Their protection from research for the benefit of others without personal consent therefore has top priority.

Gigantomanical ideas about health during the Nazi era led to disrespect for the rights and the life of the individual in order to heal the "Volkskörper". Following Jay Katz it can be outlined that if the necessity of a guaranteed human rights' protection for the individual had been well established in the professional thinking and practicing of the physicians during the Hitler era, they could never have followed the illusions and criminal consequences of the "Magna Therapia" at the expense of the individual. The model of genetic enhancement engineering, the aim of biomedicine to optimize the human being, invokes the threat of a modern "Magna Therapia" of the human being through his auto-evolution. Only by absolutely insisting on the inviolability of human dignity and everybody's right to live such a repetition of history could be prevented.

The reaction to the technically oriented discussion about biomedical feasibility and bioethical purposes must be a history-related discussion of social responsibility. This is what the German critical movement is able to contribute in the future debates.

Bibliography

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Autor

Dr. Michael Wunder, Psychologist and Psychotherapist

Protestant Foundation of Alsterdorf. Dorothea-Kasten-Str. 3, 22292 Hamburg

Quelle:

Michael Wunder: Biomedicine and Bioethics - The Human Being as Optimisation Project

Speech in the board meeting of the "Internationalen Spina bifida Vereinigung IFHSB" in Hamburg, January 23th 1999, published in : AsbH-Brief 1/99. http://www.asbh.de/

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