- Alex Mauron, Ph.D.
Fondation Louis-Jeantet de Medecine, P.O. Box 277,
CH-1211 Geneva 17, Switzerland
The IBC is in a unique position to provide leadership and focus to a world-wide debate on bioethical issues. My critique should be seen in the light of this role and this responsibility of IBC. All of us in the bioethics community have an interest in seeing the IBC fulfil this role and discharge this responsibility in truly innovative ways and without getting bogged-down in well-meaning, but conceptually fragile, generalities.
I. AIMS OF THE DECLARATION ON PROTECTION OF THE HUMAN GENOME
1.1 What, in your view, should the basic aims of protection of the human genome be, as regards international law?
To discuss the "protection of the human genome" is to assume that the genome is a valuable good of some sort and furthermore that it is at risk in some way and thus in need of protection. Yet at no point in the Declaration is it made clear what the human genome is supposed to be protected against. This oversight is in turn grounded in a lack of conceptual clarity about the notion of a human genome itself. Speaking of the "genome of a person" is already one step removed from the concrete reality of any one particular set of DNA molecules as present in human cells. Speaking of "the human genome" involves yet another abstracting step, which has highly complex and non-trivial consequences. Is "the human genome" really an ensemble of data, i.e. the set of maps and consensus sequences originating from the Human Genome Project? Or are we speaking of the human gene pool (clearly not the same thing) ? Whatever it is, in what sense can it be said to be in danger and in need of protection? Today's genome lawyers have a flourishing cottage industry going but they have no answer to these questions, because they never seem to ask them explicitly.
1.2 What conclusions do you draw from consideration of the human genome as forming part of the common heritage of humankind, and do you feel that it is appropriate to consider it so?
It is not particularly clear what is meant generally by "the common heritage of humankind", and so far U.N. instruments seem to have applied this language in two quite different contexts:
Firstly, we have certain types of resources such as the seabed and ocean floor, as well as the moon and its natural resources: making these the common heritage of humankind has the effect of voiding claims of national sovereignty over such resources and to make "the interests of all humankind" the guiding principle in exploiting them. The latter may in turn limit the private appropriation of these resources.
On the other hand, the common heritage concept is widely applied in cultural matters, where it applies both to concrete cultural artefacts and to lasting achievements in the arts and sciences, no matter whether they are of a material or more abstract, intellectual nature.
None of these two contexts is appropriate for the human genome. In fact, the Declaration draws a connection between the genome and such resources as the seabed, but fails to consider whether this analogy is relevant. If the human genome is a resource, I would like to know what it is good for and in what way it will be "used up", for that is what the term 'resource' implies. Of course, human genome data are good for something and as a matter of fact extremely useful. But I thought the whole point was to protect the human genome itself, whatever that means... The language of finite resources, and more specifically of "commons", does have its legitimate uses when it refers to commonly-held resources (land, clean air, clean water, etc.) that are valuable, but alas used up in the very process of their enjoyment. But a conceptual analysis of the genome will show precisely that it is not like the commons. Neither the concrete reality of replicating DNA molecules, nor the abstract (and infinitely replicatable) information carried by them is well described by the language of usable and finite resources.
As regards the cultural context mentioned above, the Declaration is equally shallow. No critical distance is ever taken towards the unexamined cultural representations implicit in the patrimonial language of "common heritage" (see Mauron A. & Thevoz, J.-M. "Germ-line Engineering: A Few European Voices", J. Med. & Phil 16 (1991), 649-666). Nor does it show any awareness of the pre-evolutionary, essentialist species concept that implicitly informs the Declaration as it connects the protection of the human genome with a defense of the "integrity of the human species" (itself an extremely fuzzy objective). Defenders of the Declaration would probably reply that it is not their aim to prevent Darwinian evolution from happening in the human lineage, but if such is the case, then the idea of protecting the genome becomes even more mysterious (I will not discuss here the philosophical problems that arise when conflating genomes, i.e. "DNA-texts", with the texts of human culture for the sake of preserving both).
II. HUMAN RIGHTS AND HUMAN GENETICS
2.1 According to the major international instruments, human rights are based on recognition of the dignity and freedom of human beings. How far should these principles be applied to protection of the human genome ?
Human rights are the rights of humans, not of genomes. No evidence is given that protecting genomes, or "the human genome", adds anything of a concrete nature to the protection of human individuals. Protecting the human genome is, at best, pleonastic. Moreover, the very idea that there could be rights vested in genomes over and above those vested in human persons is disquieting and raises the theoretical possibility that "genomic rights" might override individual liberties: this possibility has historically been a recurrent feature of eugenic ideologies.
2.2 In your view, what "eugenic practices contrary to the dignity or freedom of human beings" should be proscribed by the declaration?
The Declaration seems rather toothless as regards the protection from eugenic practices because it provides neither a clear defining concept of eugenics, nor any criteria to evaluate the eugenic dimension of specific human actions. Moreover, and this is bitterly ironic, the Declaration itself could conceivably be read as a eugenic document. Indeed, a consideration of the historical record clearly shows how the sacralization of the genome that pervades the Declaration closely parallels the eugenic language of yesteryear. In the latter, it was "human germ-plasm" that was idolized in quasi-religious language and proclaimed a precious resource to be protected from "degeneration", even at the cost of individual liberties (see for instance, D.J. Kevles, In the name of Eugenics : Genetics and the Uses of Human Heredity. New York : Knopf, 1985, especially chapter 4). Of course, I do not ascribe sinister motives to the drafters of the Declaration, but I wish to point to the undesirable, even though unintended, implications that result from the Declaration's lack of rigour.
2. 3 What principles should be reaffirmed with a view to guaranteeing human rights in cases where genetic research involves human beings or in the case of any other biomedical operation on the genome of a human being?
The general ethical principles pertaining to human research must be respected. In addition, specific rules of confidentiality must insure that individuals remain in control of the dissemination of genetic data pertaining to themselves. However, regulating the collection and exchange of individual or familial genetic data is not the same thing as "protecting the genome", unless we adopt very sloppy language.
III. THE STATUS OF RESEARCHERS
Do researchers have specific obligations with respect to human genetics? If so, what are they?
It all depends on what one means by "specific obligations". Researchers have general ethical obligations towards human subjects, affected third parties and to some extent to other affected sentient beings. These obligations must always be tailored to the specific aspects of whatever experiment or study is being done, whether it involves genetics or not. As regards the regulation of its research practices, there is no grounds to considering genetics intrinsically "special", over and above the need to address the concrete, specific ways in which such research affects protectable interests (familial information-sharing, issues of discrimination and conflicting interests of institutional third-parties, safety of patients, of the public, of the environment).
3. 2 Should the principle of freedom of research be limited as regards genetics?
As is the case for any basic right, the principle of freedom of research has never been an absolute one, but is constrained by other basic rights. Again, I see no reason
to single out genetics in this respect.
4. 1 SOLIDARITY AND INTERNATIONAL COOPERATION
What practical form should the duty of solidarity affirmed by the declaration take with regard to the object of protection of the human genome?
Duties of solidarity arise in the context of the societal use of genetic data, which involves two distinct aspects:
- individual and familial data as regards employers, insurers and institutional third parties generally;
- genetic data of general interest as regards intellectual protection systems such as patents;
In the first instance, it is important to assert values of solidarity and social justice against purely actuarial fairness and consumer selfishness. In the second case, it is mostly pragmatic considerations that should win the day: how is openness in exchanging biomedical research results best encouraged, with equitable returns for applied research and product development ? Those are the major issues in a nutshell. But I see nothing in the nature of these issues that mandates that they should be dealt with under the pompous heading of "protection of the human genome".
4.2 What, in your view, are the most appropriate forms of international cooperation for protection of the human genome? In particular what role should be played by cooperation in information and education ?
I am all for cooperation in educating the public and health care providers in human genetics and bioethics. This would improve the delivery of genetic services, serve the goal of more equitable access to such services and promote personal autonomy through better-informed users. But I would urge geneticists and ethicists to reject a new-fangled genomic catechism that is conceptually unsound and may in fact be harmful in implicitly using the very language of eugenics that it purports to oppose.
V OTHER REMARKS
In my opinion, the UNESCO Declaration on the Protection of the Human Genome has major flaws and I would like to suggest that it be redrafted extensively or possibly dropped entirely. For the most part, the work of the International Bioethics Committee (as reflected in the Proceedings of 1995) is not genome-centred but genetics-centred. In other words, its ethical and political evaluations take as a starting point the concrete genetic practices such as gene therapy, genetic diagnostics, genetic screening and the investigation of human genetic diversity, with full pragmatic consideration given to their medical and non-medical, societal implications. This is as it should be. This approach may be less awe-inspiring and attention-getting than to hypostatize the genome as the Holy Grail or the Holy Book(1) supposedly encapsulating the human essence. But in the long run it will be more useful and more credible to geneticists, ethical analysts and political decision-makers. The Declaration stands out as an unfortunate exception to the generally pragmatic stance of the International Bioethics Committee and should either be brought in line with it or dropped altogether.
1. No semantic gimmick has been more destructive of clear thinking on these issues than the scriptural metaphor of the genome as Holy Book. From there, the idea that there is a kind of master-text that must be meticulously preserved for future generations is well-nigh irresistible. If we really must use a popular metaphor, why not favour Richard Dawkins" "river of genes", the fluctuating, ever-changing ensemble of genes that are potentially co-present in the bodies of members of a given species, such as homo sapiens (R. Dawkins: River Out of Eden , A Darwinian View of Life. New York: Basic Books, 1995) ? This metaphor is much less conducive to the fixist illusions of the "common heritage".
Ed.- During 25-29 September the UNESCO International Bioethics Committee will be meeting in Paris to discuss the Declaration on the Human Genome, and several reports on topics in bioethics: population genetics; genetic counseling; teaching of bioethics in the Americas; and Neurosciences. Further topics will be discussed in the coming year.
UNESCO International Bioethics Committee welcomes all comments, and those interested in obtaining more information on any of these topics, or the 1994 reports on genetic therapy and genetic screening, should contact:
Mr. Georges Kutukdjian,
Director, Bioethics Unit (SHS), UNESCO,
1 rue Miollis, 75732 Paris Cedex 15, FRANCE.
There is also a Newsletter Spotlight on Ethics, the first issue appeared in June, 1995. The text of the draft Declaration on the Human Genome appeared in the last issue of EJAIB, together with an explanatory note and questionnaire. The contents are on-line at the Eubios Ethics Institute world wide web site:
Go back to EJAIB September 1995
Go back to EJAIB
The Eubios Ethics Institute is on the world wide web of Internet: