In 1993, UNESCO founded the International Committee for Bioethics, (IBC).The Committee was tasked with devising an international instrument to protect the human genome. Such international instruments are found in different forms. The strongest and most binding is a type of convention where the states are legally bound upon ratification (e.g. the Oviedo Convention). Given UNESCO's context and the controversy surrounding genomics research, it was soon clear that a convention would be unrealistic and that a declaration would be more realistic.
The preliminary work of the IBC took several years, from 1993 to 1997. The work brought with it a number of open and partly hidden conflicts. The closer the work neared to completion, the more conflict that arose in discussions. The IBC's annual open meeting was gradually followed by several hundred participating observers, many of whom were from interested NGOs, such as representatives from indigenous communities etc. At that time, membership in the IBC was open to national parliamentarians and various scientific experts. The IBC's meetings were (partly) open to observers who could contribute to the discussion. One of the questions that became critical was whether it was possible for such a committee to have a mandate that could disregard the sovereignty of national parliaments. Much diplomacy was needed behind closed doors to ensure that the declaration did not crash and burn before achieving its goal. The discussions led to subsequent changes to the IBC, such that the committee now consists of an advisory scientific committee and a committee of parliamentarians. The issue of the possibility of UNESCO proposing or implementing normative instruments also became a relevant problem, particularly after the USA re-joined UNESCO.
The principles of the declaration correspond to many principles within human rights and medical ethics, but are extended to apply to the human genome. A vital key to doing this is that the declaration stipulates that the human genome is, in a symbolic sense, part of the common heritage of humanity, and as such should be protected. In its natural state, the human genome should not therefore give rise to financial profit. The benefits of genetic research must extend to everyone.
Neither must people be discriminated against on the basis of genetic information. This principle naturally has implications for minorities and insurance companies, among others.
Research on the genome must be subject to the standard conditions for informed consent and confidentiality, which can only be deviated from in exceptional cases and by a legal ruling. All research on the genome should consider the ethical, legal and economic consequences of such research.
The declaration as a whole has been disappointing in relation to what many NGOs had hoped for. The declaration did not, for example, provide a clear stance on the issue of patenting, except in very general terms. Furthermore, it did not expressly specify what is meant by human dignity, other than the negative statement that people cannot be reduced to their genetic characteristics. On the other hand, the declaration did manage to clearly emphasize that the human genome is a common human inheritance, such that all research and its application should benefit everyone, particularly in developing countries. Thus, the declaration sends out a signal that can potentially limit special interests and exploitation of advantages in research and economics. As such, it has become an important reference for many subsequent documents, both nationally and internationally. However, since it is not legally binding in the UN member states, supplementary legislation is needed in order to make it binding in specific cases.
The declaration can be viewed at http://portal.unesco.org/en/ev.php-URL_ID=13177&URL_DO=DO_TOPIC&URL_SECTION=201.html
This article has been translated from Norwegian by Carole Hognestad, Akasie språktjenester AS.