The Global Picture and the European Situation Regarding Bioethics and Genetic Engineering

This article is an account of a presentation at the 1998 "Seminar on Bioethics and Disabled people" by 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. In her presentation, Dr. Degener advanced a theory that bioethics is incompatible with human rights philosophy. She also discusses how existing international standards with regard to human rights including The Universal Declaration of Human Rights (1948) and the Nuremberg Code (1947) 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. Internet publication URL: www.independentliving.org/docs1/dpibethics.html. In: Disabled Peoples' International (DPI). 1998. "Seminar on Bioethics and Disabled people." Internet publication URL: www.independentliving.org/docs1/dpibethics.html

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

  • is a massive scientific project involving widespread scientific collaboration, mainly in America, to map out our genetic make-up, establish the bio-chemical function of every gene and find out what makes one person different from another.
  • will ultimately find the DNA sequence of all the genes in all the chromosomes of a human being.
  • genes are made of DNA - DNA is like a message written in code. A typical gene has a thousand letters of code.
  • will write out all the codes for the 70,000 different genes that we have in our bodies.
  • the idea is to find out the sequence of letters and code for all genetic material.

The UNESCO Declaration is the first international instrument to state that the human genome is the heritage of mankind and should be preserved. It puts the human genome on a level with the earth and the seas but it is ambiguous. Dr. Degener believes it breaches individual human rights philosophy as in preserving the human genome, individual interest can be outweighed by the collective interest of preserving the heritage of mankind. The alternative argument is that the Declaration talks of the heritage of mankind in order to oppose the privatisation of elements of the genome by private companies.

Gene Patenting

Private pharmaceutical companies want to "patent" genes they have discovered in order to protect their research and financial investments. If they discover a gene, which looks particularly interesting, they can patent it, thereby preventing its use by others, although the research work does have to be published. When an application - a cure - is found for the condition associated with the gene, another company will not be able to use the research material surrounding the gene without paying for it.

Issues arising from the presentation
  • Dr. Degener is against genetic experimentation not because of the science or the technology but the context in which this knowledge is developed.
  • it is important to develop this work within a notion of rights. Current health practices have values attached to them and eugenics is being allowed in through the back door.
  • we need to know where the input is and what can and cannot be allowed. Who is saying 'No'? Who is setting the standards whilst academics and medics race ahead?
  • bio-ethics accords life itself no intrinsic value when distinction is made between beings and persons - where personhood, not human beingness, has to be proved.
  • bio-ethics reduces the value of life to utilitarianism in the same way that quite a lot of health service research and planning provision does - measuring the best interests of society as a whole on a numerical scale. In this respect QUALYS equate quite simply with violation.
  • we are entering a "bio-determinism" century. Outlawing genetic research has proved to be mistaken in the past but genetic research has opened up ways for selective practices and removed the holistic view of disease, disability and human life.
  • part of the bio-ethics debate is rooted in the idea that we are expensive, which links to other debates such as the question of benefits.
  • if all people, including disabled people, are included in the Universal Declaration then, whether healthy or not or whether we define disability in social terms or not, our lives are as inviolate in dignity and freedom as anyone else's.

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