Studies on the History of "Euthanasia"
June 1996
Note: In Grafeneck near Münsingen (Schwäbische Alb, Germany), between January and December 1940 approximately 10.000 mentally handicapped people or people with mental diseases were killed with toxic gas in the course of the Nazi »Euthanasia« programme. In this place, which today bears a memorial for the victims, "Studies on the History of 'Euthanasia'" met in October 1995 and discussed the dangers of modern bioethics. Thus, the Grafeneck declaration came to be and was slightly revised in June 1996 when the European Council presented the final version of the "Convention on Human Rights and Biomedicine".
Ethics in the philosophical sense always refers to man as a social being, not to man as biological matter. The notion of "bioethics" is therefore misleading. It is impossible to conceive "bioethics" as fundamental ethics.
Bioethics in its actual sense is defined as ethics concerning the application of biological sciences to man. It was developed in the last twenty years in the United States. Our Declaration which claims the human rights tradition as its normative background refers to this concept of bioethics.
As applied ethics, bioethics can only be partial ethics and needs to prove its compatibility with fundamental ethics (like for instance general social ethics). Which it fails to do. Nonetheless, bioethics has long taken the international lead and pushed aside any other approach in medical ethics. Thus, these partial ethics is about to become the general ethics of modern medicine.
The UNESCO is planning an international declaration on the application of the new biological sciences on man for the year 1998, fifty years after the Universal Declaration of Human Rights in 1948. Its working title is "Declaration on Bioethics". In 1993, the General Assembly of the UNESCO has founded an International Bioethics Committee for this purpose.
The convention on bioethics by the European Council, "Convention for the protection of human rights and dignity of the Human Being with regard to the Application of Biology and Medicine" first made public in 1994, produced in preparation of the UNESCOproject and intended to become part of it, also bore the subtitle "Bioethics Convention". It was replaced by the subtitle "Convention on Human Rights and Biomedicine" only in the final version presented in June 1996, which however doesn't change the bioethical way of thinking in the convention's text.
"Thanks to discoveries in the fields of genetic, neurobiology and embryology", says a UNESCOpaper on this planned declaration (Dok. 93/4Doc.Inf.1), "for the first time, man has access to knowledge about his own vital mechanisms. Above and beyond this knowledge, he has given himself the power to transform the development processes of living, of all living species, including his own... Perhaps for the first time, mankind has the opportunity, thanks to its knowledge and its technologies, to ally fully uptodate thinking with the challenges it must take up rather than simply recognizing the damage post factum."
After the disasters of modern nuclear physics, after Hiroshima and Tchernobyl, this is an enticing thought. We consider it dangerous, however, that the current thinking supposed to fathom biological sciences and to reconcile the development of these sciences with ethical norms should precisely come from bioethics.
With great alarm, we must say that bioethics is not an instrument to protect
human rights, but, on the contrary, leaves the ground of human rights in
fundamental issues. Bioethics neglects the experience of history and disregards
the protection of invidual human rights in favour of opportunistic
evaluations.
I. BIOETHICS VERSUS HUMAN DIGNITY
1.1. Bioethics and Human Dignity
Bioethics denies supreme values such as the inviolability of human life: In principle, human life is neither meaningful nor worthy for bioethics, though it can gain meaning and worth through its actions. In the opinion of bioethicists, characteristics such as selfawareness, selfcontrol, memory, communication abilities and a sense of time, of future are preconditions of such meaningful actions. Only with these quality marks, human life to them becomes personal life. Without them, so they maintain, human life is non-personal, without dignity, value or rights.
Thus, bioethics denies the universality of human rights guaranteeing any person, no matter what his/her colour, sex, achievement or health may be, the unviolability of his/her person and the inviolability of his/her dignity. This guarantee means that the individual does not have to earn his/her fundamental rights and does not owe them to anybody.
Bioethics wants to abolish this principle: The individual is supposed to qualify for his/her fundamental rights to protection and dignity through his/her qualities and achievements. The individual is supposed to owe his/her fundamental rights to others who decide if his/her qualities and achievements are sufficient.
On the basis of this bioethical principle, people with handicaps or old age
disorders are depreciated and degraded to objects of research and material
depots for transplantation, dying people are considered as a mere cost factor,
embryos are declared things.
1.2. Bioethic And the Freedom of Research
Bioethics is abandoning the foundations of the human rights tradition in yet another important point. For bioethics all values are relative, to be weighed against each other in "moral costbenefitanalyses". Bioethics places the guarantees for the protection of the individual's human rights on the same level as the freedom of research. This deprives the fundamental rights of their absolute and inalienable character.
At the same time, bioethics claims to be discursive ethics. Discursive ethics, however, is built on several principles: the voluntariness to participate in the discourse, equal rights of all participants, respect for one another's freedom, i.e. of the other's inalienable fundamental rights, which is what makes discourse possible in the first place. Bioethics disregards just these principles, replacing them by an interestorientated and therefore dangerous decision ethics which is incompatible with discursive ethics.
Two kinds of fundamental rights need to be harmonised and protected, "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", says a justificative paper for the European Council's convention on bioethics: "the right of the individual to dignity and the right to participate in and benefit from scientific and technological progress as part of the heritage of all mankind" (ADOC7156, point 10). This subjects human dignity to a societal evaluation of progress.
The UNESCO Committee on Bioethics is even quoting an "imperative of the freedom of research", placed on the same level as the "ethical imperative" which the UNESCO with its universal role represents. This equation with an ethical value of lower rank abandons the individual guarantee of human rights.
Human rights cannot be assured with bioethical positions. On the contrary:
Instead of controlling research on the basis of human rights, bioethics
associates human rights with dogmatism. Noëlle Lenoir, head of the UNESCO
Committee on Bioethics, says it quite openly: "There shouldn't be any dogmatism
in the contents of the UNESCOdeclaration and convention. We need to prepare
a pragmatic document, open for the changes that scientific progress makes
necessary" (SHS93CONF 015/3).
1.3. Bioethics And a New Collective Commitment
The fundamental position of human rights saying that man is a member of human society suffers a small but significative rephrasing in bioethics - by underlining that man does not only stand for the individual personal human being, but also, always, for the whole human species. The biological aspect of man is changed from a partial characteristic to an absolute and takes the place of the socioethical principle that man is always a social being.
This idea appears literally in the Preamble of the Council of Europe's proposed Convention on Bioethics. The member states of the Council of Europe intend to agree on the Convention convinced "of the necessity to respect man as an individual and as part of the human species".
What looks like a mere semantic variation of common sense, has farreaching consequences: Research for the benefit of somebody other than the person who is the object of the research is played up the "research for the benefit of the human species" becomes a "human right of mankind".
This is an attempt to separate medicine from its commitment to individual ethics in order to speed up the progress of biological sciences. Any research for the benefit of others which is not built on the principle of voluntariness needs surrogate legitimations referring to collective interests: to the benefit of future patients with the same disease, to the benefit of future generations, of mankind as a whole.
"The patient could also find comfort and meaningfulness in serving the purposes
of research and thus contributing to help other people in a similar situation",
was said in a debate on the constitutionality of the Council of Europe's
proposed Convention (Ministerialdirigent G. Belchaus, Report on the state
of discussion in the Council og Europe, during the congress "May we do all
we can do?", Diakonisches Werk BadenWürttemberg, Stuttgart, 21 March
1995).
II. BIOETHICS REACHING FOR MAN
2.1. Reaching for People Not Able to Consent
The "Convention on Human Rights and Biomedicine" proposed by the Council od Europe legitimates, on the basis on the bioethical notion of the human being, biomedical research on persons not able to consent, even if the person who is the object of research does not consent and if the research is of no therapeutic use for him/her.
This is meant to abolish the human rights guarantee of the unviolability
of the person for the large group of people not able of consenting i.e. the
mentally handicapped, the mentally ill, the oldage infirm, the braindiseased
oder the people with a temporary or longer persistent vegetative state and
to replace it by a special right. According to this, an intervention shall
be permitted when risks and burdon are considered minimal and no persons
able to consent can be found who are actually willing to consent to such
an intervention. Massive protest led to the refusal of the Convention on
Bioethics in its present form by the Parliamentary Assembly of the Council
of Europe who demanded fundamental changes. In the June 1996 version submitted
to the bodies of decision, however, the old plan remains untouched. It also
provides for the removal of regenerative tissue for the benefit of close
relatives without personal consent by people unable to consent.
2.2. Reaching for Human Embryos
The permission of research on embryos is a decisive step for the biological sciences. The efforts to optimize invitro fertilization depend on it. It is also decisive for genetic diagnostics and genetic therapy to be allowed to experiment with embryos. Until now, Germany prohibits research on viable human embryos but not on embryos dead or uncapable of developing.
In contrast to this legal situation, the final version of the Council of
Europe's convention from June 1996 legalizes research on embryos. It links
the permission merely to a "sufficient protection of the embryo" without
specifying what that is supposed to mean. This opens the door for europewide
permission of embryo research. Even the time limit 14 day of development
is not sure any more. Only the production of human embryos for research purposes
is prohibited. Concrete problems such as selling embryos or using human embryos
for therapeutic experiments (for instance of Parkinson's disease) is to be
settled in protocols that are presently not available to the public, yet
intended to become an intagral part of the Convention.
2.3. Reaching for the Human Genome
In the "Draft Declaration on the Protection of the Human Genome", presented by the UNESCO in mid 1995, the human genome is declared "heritage of mankind". The choice of words makes one think this heritage is supposed to be preserved, similar to the world's cultural heritage. It also suggests that there is a general interest in exploiting this "heritage". Strikingly, the UNESCO text neither excludes interference with the genome, genetic manipulation nor manipulation of the germ line cells, nor predictive genetic testing and the patenting of gene parts. There is no statement concerning data protection.
In view of worldwide genemappingprojects, first patenting of genes and genemanipulations on animals, the text's lack of concreteness is astonishing. Its non-regulation of important issues encourages the economical exploitation of the human genome, especially because the proposed Declaration contains the explicit commitment of the national states to subsidize research. This serves the interests of the biotechnical industry where they like to call genes the "currency of the future".
The draft Convention of the Council of Europe already legitimates interventions on the human genome for preventive, therapeutic or diagnostic purposes. Genetic testing for purposes of health and science is mostly permitted. Provisions on consent and on data protection in relation to the communication of test results are missing entirely interventions on the human genome with the aim to "introduce any modification in the genome of any descendants" is rejected.
The limits between interventions on the genome with unintentional and those with intentional consequences for the germ line cell is vague. In view of the foreseeable development towards a worldwide permission of germ line manipulation and the discussions in the biological sciences and Steering Committee of the Council of Europe responsible for the preparation of the European Bioethics Convention leave little doubt that this last barrier will soon fall as well.
Therefore, an International Declaration for the Protection of the Human Genome
must unmistakably state that each human being carries his/her individual
genome which is unalienable as part of his/her personality. Any research
and therapeutic intervention must be based on voluntary and free consent.
Any intervention on germ line cells must explicitly be prohibited.
III. OUR DEMANDS
3.1. Human Rights Guarantees Instead of Bioethical Evaluations
Considering the dangers of the new biomedical sciences and their irresponsible bioethical legitimation, we demand that human rights be respected in the evaluation of biomedical options and the determination of an ethically acceptable frame work for the biomedical development.
The Universal Declaration of Human Rights of 1948, the Constitution of the Federal Republic of Germany and the constitutions of other countries which refer to the Human Rights Charta clearly refrain from defining what a human being is, in order not to exclude or discriminate anybody.
The draft Bioethics Convention of the Council of Europe avoids defining the human being for another reason. The Steering Committee could not agree on what a human being is and for whom human rights should apply. The concepts of "human life", "human being" or "everybody" were intentionally left open so that the Convention could be more easily accepted. "Otherwise", says reportsubmitting member Palacios (ADoc 7156), "given the philosophical, scientific, ethical and religious implications, we might become involved in an interminable debate."
Against the bioethical doctrine of the person which violates human rights, we hold an understanding of man that includes all human beings, embraces human life from its beginning and in all its forms and guarantees its rights and its dignity.
Such a position also touches all ethical questions of abortion. Just as we consider it a necessary right to be able to interrupt a pregnancy for medical or social reasons until the third month, we regard every individual decision in such a case as not only difficult, but also, always, as ethically contestable. Both values, the woman's right to selfdetermination and the child's right to life, are in a fundamental conflict that neither bioethical evaluations nor maximalist or pragmatic positions are able to dissolve.
If human life is deemed as protected by principle and human dignity as constitutive for humanity, there cannot be any decisions on the worthiness or unworthiness of human life by third persons. This includes abortions for eugenic reasons (which can very well be hidden behind a social or medical indication) and eugenically motivated nonimplantations of embryos in invitro fertilization. Furthermore, any destructive embryo research or use of embryos to produce any kind of medication must be clearly rejected.
We consider personal decisions to refrain from conceiving children based
on genetic counselling as tolerable, compatible with the understanding of
man in the context of human rights; this, however, is not the case with a
coerced decisions of this kind for merely societal reasons. But the borders
between a really voluntary decision and one taken under pressure can become
blurred when a society is hostile to the handicapped and fails to take the
clear ethical position that handicapped children are just as welcome as
unhandicapped ones.
3.2. The Nuremberg Code a Starting Point for the Future
In our opinion, the only basis for human rights in medicine can be the Nuremberg Code: In view of the Nazi medicine crimes, it was formulated in 1947 as a general, internationally respected ethical basis for medicine also in order to give the International Court of Nuremberg a foundation for the judgment on the medical experiments and the eugenic crimes.
According to the Nuremberg Code, the human being with his/her individual,
guaranteed fundamental human rights is the main concern of medicine, not
medical research, scientific progress or the benefit of society. The Nuremberg
Code must remain the foundation for the future of medicine and the application
of biomedical sciences on man.
3.3. Special Protection for Persons Not Able to Consent
Human medicine is founded on the voluntary consent after complete information (informed consent) which any treatment, therapy and medical research to the benefit of third persons must be based upon. According to the Nuremberg Code this consent is indispensible. It cannot be substituted by proxy consent and only be dispensed with in emergencies. It presupposes complete information on the part of physician or examining person and the ability to understand and make independent decisions on the part of patient. Consent can be withdrawn freely any time.
There have been numerous attempts to revise the legal norms of the Nuremberg Code and to adapt it to the interests of research. The 1964 "Declaration of Helsinki", however, contains a specification we endorse: Medical examinations which are useful for the patient are defined as clinical research and can, in the case of persons not able to consent, be legitimated, by way of substitute, through the consent of the legal guardian.
This excludes any research for the benefit of third paries, carried out without the consent of the patient. Persons not able to consent are unmistakably protected from this type of research and from human experimentations. Any secundary argument of justification such as low risk and high benefit for the same patient group or for mankind as a whole must be rejected, just as the reference to comfort and meaningfulness in contributing to the welfare of further patients.
We reject all other revisions of the Nuremberg Code in the Declarations of Helsinki and later ones, which concede priority to the interests of research versus the rights of the patients and undermine the obligation to personal consent.
Instead, we suggest to place the following principle, formulated by Jay Katz in the spirit of the Nuremberg Code in view of later revisions, back into the center of attention today and to include it in every declaration on biomedicine:
"In research on man and woman, the interest of science and society should never take precedence over considerations related to the wellbeing of the subject as determined by the subject, after having been fully informed by the physicianscientist, so that both can make an understanding and enlightened decision." (Jay Katz, The NaziDoctors and the Nuremberg Code, 1992, p. 232)
This principle gives the bioethical evaluations between individual human
rights and the supposed human right to research an unmistakable rebuff. Equally,
any obligation towards the collective that might influence the individual
to offer his/her body as an object of experimentation to the benefit of future
generations is clearly rejected. Solidarity can only be achieved through
voluntary consent of the individual, not through compulsory obligation or
enforcement by law.
IV. HISTORY MUST NOT REPEAT ITSELF
Bioethical references to "higher interests", the "benefit of future generations" or economic considerations about a "strengthening the health of mankind" rouse our scepticism. We see the danger that history might repeat itself.
Gigantomanical ideas about health during the Nazi era led to disrespect for the rights and even the life of the individual in order to "heal the Volkskörper". If the necessity of a guaranteed human rights' protection for the individual had been established well 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", the healing of "Volkskörper", at the expense of the individual.
To remember the Nuremberg Code and the historical experience leading there means to turn around the worldwide development which legitimates biomedical possibilities post factum via bioethics.
We admit that such a change in orientation may slow down the pace of research or may produce research results too late for tzhe patients living now.
In view of the immense dangers of an unrestrained progress of biological sciences, bioethically legitimated and violating human rights, and in view of the newly arising dangers of a "Magna Therapia" to which the rights of the individual are sacrificed, we suggest, following a principle of slowness, to control the development of biological sciences on the strict basis of human rights.
Considering the historical experience of the experiments with human beings in nationalsocialism and their utilization after 1945, we reject a medical progress that is based upon experiments which violate human rights.
In the past, medical progress has not automatically led to an improvement of life quality and life expectation of the people. The medical care of the world population's majority is not on the level of medical knowledge. The progress of biological sciences and medicine must always be considered in terms of an equal distribution of medical resources.
A humane progress of biological sciences and medicine is only possible if based upon the principles of voluntarity, availability for all people and unviolability of dignity and right to life of all mankind.
D-22299 Hamburg
Translated by Frank Heibert, Berlin