PROTECTING HUMAN GENOME IS RESPONSIBILITY OF ALL HUMANITY
Dr. Giorgio Filibeck
Pontifical Council for Justice and Peace
Observations on the Human Genome Declaration recently adopted by the General Conference of UNESCO
The adoption of the Declaration on the Human Genome (11 November 1997) by the Twenty-ninth Session of the General Conference of UNESCO was generally greeted as an important step towards a more adequate protection of human dignity in the area of scientific research.
An editorial in Le Monde emphasizes that the Declaration, although it has no binding authority, "nevertheless constitutes the international juridical basis on which States will have to rely when they decide to translate into their own national legislation the principles set forth by UNESCO" (13 November 1997).
The task was not an easy one, and was undertaken with determination and far-sightedness by the Director-General of UNESCO through the setting up, in 1993, of an International Bioethics Committee composed of highly qualified experts.
Towards the end of 1996, the work of the Committee led to the production of a first draft of a Declaration which was then examined by government experts at a meeting held in July 1997 at UNESCO headquarters in Paris. The text approved at that meeting is the one adopted at the recent General Conference.
The document deals with a problem that is crucial by reason of its many complex and delicate implications: in fact, through the genes it is possible to affect a person's biological identity, to the point of influencing the way in which life itself is transmitted. As the Explanatory Note of the Declaration specifies: "The notion of the human genome refers both to the full set of genes of each individual - in the twin senses of genetic material (DNA molecules) and genetic information - and to the entire range of genes which constitutes the human race" (n. 6).
We should be grateful to UNESCO for having recognized the importance and urgency of the subject by trying to establish criteria capable of orienting and putting into proper context the rapid advance of scientific research in the field of genetics, with the purpose of thus ensuring adequate protection of the dignity of every human being and the whole human race.
Some of the more noteworthy positive elements of the Declaration are the statements that: human dignity is not a function of individual genetic characteristics (article 2a); the genome in its natural state cannot be used as a source of financial gain (article 4); the law must guarantee the protection of the genome in cases of research, treatment and diagnosis (article 5a), and must also require the free and informed previous consent of the individual concerned (article 5b); no one must be discriminated against by reason of his or her genetic characteristics (article 6); research activity entails specific responsibility with regard to meticulousness, caution, intellectual honesty and integrity (article 13); States must avoid using research for non-peaceful purposes (article 15), must promote the international dissemination of scientific knowledge concerning the genome (article 18) and must cooperate especially with developing countries (article 19); intervening on the germ-line is contrary to human dignity (article 24).
Is the balance therefore completely positive? Unfortunately, the answer to this question cannot fail to indicate at least three essential aspects which have not received sufficient attention on the part of those drafting the document; they were sacrificed to the desire for compromise which prevailed so that a consensus could be reached and the document passed.
In general, it can be noted that the Declaration seems to suffer from a deficiency which can be called "genetic": the lack of a solid anthropological perspective on which to anchor the principles which must guide the juridical formulation.
We meet this in the very first article, which affirms: "The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity". The genome cannot however be considered as the basis of the dignity and unity which characterize the whole human species, unless one has a merely and reductively biological perspective of these principles.
Moreover, the same article goes on to state that the genome "in a symbolic sense ... is the heritage of humanity". This formulation replaces the one originally proposed by the International Bioethics Committee, which began the first article with a statement which was as categorical as it was ambiguous: "The human genome is the common heritage of humanity". A similar formula successfully applied to marine space in the framework of the Conference on the Law of the Sea and fundamentally derived - we do well to remember - from the principle of the "universal destination of the goods of the earth", a recurring theme in the social teaching of the Church, does not fit a reality such as the genome. For the genome presents not only a general dimension, inasmuch as it is an element common to the whole human species; but it also has an individual dimension, inasmuch as it is the distinctive element of every human being, who receives it from his or her parents in the act of conception. For this reason we frequently speak of a "genetic heritage", which per se belongs exclusively and singularly to the individual. Recourse to the notion of a 11 common heritage" in order to protect the human genome is inappropriate, because one then runs the risk of robbing each human being of his or her very identity, to the point of tailing in the obligation to respect human dignity at every stage of the individual's life.
The criticisms directed at the original draft of the first article, put forward at the July meeting by various delegations including that of the Holy See, were only partially accepted, and therefore in this article there remains the generic reference to the genome as the "heritage of humanity", even though "in a symbolic sense". One wonders what the import could be of such a symbolic reference in a text that claims to offer guidelines of a juridical nature! It would have been better to insert a new paragraph to express the idea that "the whole of humanity has a particular responsibility to protect the human genome", in accordance with the suggestion contained in the intervention of the head of the Holy See's Delegation to the General Conference (cf. L'Osservatore Romano, 31 October 1997, p. 2).
Another consequence of the lack of a solid anthropological foundation can be noted in a glaring omission in the Declaration: the absence of references to the embryo or the foetus. Such a silence could authorize interpretations allowing certain procedures which actually contradict the purposes of the Declaration itself. Article 17 recommends that States "should foster ... research on identification, prevention and treatment of genetically-based and genetically-influenced diseases", but, as observed by the Holy See's representative to the Third Commission of the General Conference, this fails to take into consideration the fact that there exist many different types of preventive measures, including those which tend to selection based on genetic criteria which are ethically incompatible with the respect due to life which is just beginning, or based on unacceptable choices motivated by eugenic racism.
A further aspect causes legitimate concern. Many people have expressed satisfaction at the promptness with which the Declaration has forbidden cloning, a prohibition which did not figure in the original draft produced by the International Bioethics Committee. However, a careful reading of the text of article 11 reveals that only "reproductive" cloning of human beings is prohibited. All other types of cloning thus seem to be allowed, including cloning for the purpose of research on embryonic life in vitro.
Once more it is necessary to raise a central issue: what concept of human life is meant to form the basis of initiatives aimed at juridically regulating the field of genetic research and its applications? It is from -the answer to this agonizing question that human life either acquires an inviolable value or remains vulnerable to every kind of manipulation, to the point of arbitrary suppression.
Although UNESCO has not been able to respond fully to the challenge posed by this issue, the Declaration on the Human Genome remains a document worthy of consideration, representing as it does a serious contribution of reflection on a matter of which the boundaries are growing constantly wider, thus making further examination necessary. As the President of the Social Commission of the French Bishops' Conference, at the conclusion of an articulate and wellbalanced evaluation of the document, observed: it is to be hoped that the Declaration "will open the way to further recommendations capable of providing the necessary clarifications and guarantees" (20 October 1997).
The stakes are very high indeed: touching the genome means touching the origin of life, and touching the origin of life has always brought up disquieting visions. No one can forget the sinister image of Homunculus who leaps out of the powerfully evocative pages of Goethe's Faust.
It is not a question of exorcizing such spectres but of rejecting the design of a creature with ambitions to become the Creator, of resisting the ancient temptation "you will be like God" (Gn 3:5), of refusing insane projects of power and wealth, of understanding the fallacious nature of the attempt to give life to a being whose origin is dependent on no external cause save technology. The final outcome of such an attempt would be the production of a being totally enslaved precisely because it has been totally programmed. No, we must say clearly: such a path does not lead to the advancement of science, but only to the degradation of humanity.
Weekly Edition in English
11 February 1998, page 10
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