In: Seminar on Bioethics and Disabled People, 1998 | Panel Discussion - Open Debate
Dr. Theresia Degener, legal adviser to the German Council
of Centres for Self-Determined Living and lecturer
at the Universities of Frankfurt, Mainz and Leipzig
Dr. Degener advanced a theory that bioethics is incompatible with human rights philosophy. A climate of cutbacks in spending on public services leads to a situation where the cost of services to disabled people is seen as a social burden. Medical research for scientific development is proposed as being in the best interest of society and the cost of disabled people "lives are weighed against the benefits of scientific research". In this context, some eugenicist practices are seen as biological solutions to a social problem.
The philosophy underpinning bioethics, or bio-politics, denies fundamental principles of human rights such as the sanctity of life and separates the idea of human life from personhood. In this approach, human life is regarded as biological material and has no value as such. For bioethicists, capacities such as consciousness, self-confidence, self control, memory and communication indicate "personhood" and thus give life value. Bio-politics denies the universality of basic human right irrespective of "capacities, merits or health status" and devalues the lives of disabled people. It enjoys a "moral + cost - benefit analysis" to decide if the social (majority) benefit of medical experimentation and scientific research, outweighs the individual interest. This should not happen if individual human rights are respected.
Dr. Degener reminded participants of the provisions of existing international standards:
The Universal Declaration of Human Rights (1948) says: "Recognition of the inherent dignity and of the equal and inalienable right of all members of the human family is the foundation of freedom, justice and peace in the world".
The Standard Rules on Equalization of Opportunities for Persons with Disabilities says: "The principles of equal rights implies that the needs of each and every individual are of equal importance, that those needs must be made the basis for the planning of societies..."
Our rights are also protected by the Nuremberg Code (1947) and the Principles for the Protection of Persons with Mental Illness and the Improvement of Mental Health Care (1991).
The Nuremberg Code was a clear answer from the medical/scientific community of the United Nations in 1947 to the atrocities carried out by doctors under the Nazi regime. It is a very short document saying that medical experimentation on human beings can only be carried out with the pre-informed consent of the patient. The Helsinki and Tokyo Declarations are of later dates (produced by the World Medical Association). They are considered the international human rights standard on medical experimentation and the experimental use of science on human beings. All three documents forbid or prohibit medical experiments on persons who cannot give informed consent unless it is of therapeutic value to the patient. They are not legally binding but have high value as legal standards.
These rights are undermined by the draft UNESCO Declaration on Bio-ethics and Human Rights and the European Convention on Human Rights and Bio-Medicine; both of which were designed to protect freedom of research. They allow for widespread genetic research and testing for "health purposes", including medical experiments on people who are unable to give consent (a clear violation of the Nuremberg code). There has been vigorous protest about this in Germany.
Although the UNESCO Declaration gives primacy to the individual in that it states individual rights should not be outweighed by collective rights and the European Convention states no one should be discriminated against on the basis of genetic tests, they give no indication of how such protection will be implemented. Requirements for safety are very low and many problems related to genetic manipulation, research and gene patenting are left unregulated.Dr. Degener adds that the texts are vague and serve the interests of the bio-medical industry who classify genes as the 'currency of the future'.
The UNESCO Declaration will be passed in 1998 and, although not binding in law it sets international standards. The European Convention was passed in 1996 and is currently being ratified by member states of the Council of Europe. As a treaty, once ratified it becomes part of the national legal system.
The Human Genome Project