4. International Ethical and Legal Regime over
Human Genome Diversity Research: The Search
for an Alternate Source of Beliefs
National Law School of India, Nagarabhawi, Bangalore 72
It is here that positivist thinking in legal jurisprudence comes into play. In dissociating law from morality, this school of thought recognizes implicitly that there is yet another ideal to be aimed for, how that is achieved is only a matter of procedure. The same is true in international law. Where a new morality is thrown up by the vicissitudes of time and history, events subsequent in time have shown that a strong willed international community can make such rules of the conscience legally binding.
In this sense there is a very close connection between individual morality and the impersonal one of the state. A state is but a collectivity of its people and it cannot have a morality distinct from the one professed by its citizens. From this it is but a small step to recognizing that the society of states must be subject to a transcendental moral and political order that prompts them to treat one another as more than a means to an end. No doubt public opinion is an amorphous entity, but on certain specific issues it may crystallize itself into objective moral channels. The process in which such crystallization takes place is important, equally important is the source of these moral beliefs, for knowledge of such sources could be invaluable in evaluating the working of such norms in a realistic nation-state framework.
An issue that provides a remarkable area
for such evaluation is the controversy over the Human Genome Project
(HGP). Every now and then technological advances brew up bitter
concoctions that raise new ethical and normative issues and exacerbate
old ones. The dynamics of such technology appear to change our
very notions of the morally unthinkable. A biotechnological advances
proceed on an hitherto uncharted course, there has arisen a new
need to define what we are, what the limits of human endeavor
ought to be. Research on human genome diversity, with its ethical
and politically significant traits promises to once again deny
the static nature of an international law divorced from morality.
Demystifying Human Genome Research
A 'biorevolution' is taking place around us that has echoed reverberations, both in the world of science and of business. As more and more people come to believe that the new biotechnologies will transform our lives more profoundly than transistors or computers, prudence demands that a realistic assessment be made of the positive nature of such contributions, the risks inherent in the science, its applications and its commercialization. It is also a critical time for policy formulation, in that legislators, courts, government agencies and commissions are breaking new ground on attempting a response to this science that could well change the way we think of ourselves as "human".
A good place to understand the dynamics of this science is the Human Genome Organization (HUGO) and the HGP which is a 15 year, $3 billion effort to analyze human genetic material in its ultimate molecular detail. This effort, initially funded by the United States federal government, seems to promise the best hope yet, for ultimately defeating diseases long known to be inherited and diagnosing and presumably preventing other conditions thought to have subtle links with genes. That this study of human genetics can be used to harm as well as to help, is a fact acknowledged by the leaders of this project from the start (2). Indeed, this is seen from the fact that they have made it a point of devoting millions of dollars to studying ethical, legal, and social questions thrown up by the project.
The popular media is today rife with the scientists' attempt at linking criminal and other behaviors, intelligence, mental health, propensity to diseases, even sexual orientation to our genes, the complete repertoire of which we have at birth. This implies that our lives are merely the unfolding of a pre-determined pattern over which we have little or no control (3). It is easy to see that the potential for abuse is high, not least by insurers and employers.
Several European countries have taken steps to prevent the abuse of genetic data. France, Belgium and Norway all have laws preventing the abuse of genetic information by life and medical insurance companies and most employers. Civil liberties concerns linked to the need to keep people's genetic or personal health information private, is the prime mover behind several proposed federal laws in the United States (4). Problematic though they are, the nature of these developments is such that they may be controlled by deft municipal laws, backed of course by the necessary political will.
In contrast most of the political flak has been taken by the HGDP (not formally linked to the HGP), a plan to collect DNA samples systematically from about 500 linguistically distinct groups throughout the world in order to analyze the dynamics of genetic variation (5). The data collected it is urged would help to provide a more balanced perspective of humanity's genetic resources than the HGP, which so far is focusing on the profile of a mosaic of a few groups of individuals, primarily of European origin.
Medical science has long been aware that there is not just one human map, that each community can have slightly different genetic composition that could be invaluable to medicine (both preventive and therapeutic). But the increasing rate at which populations are mixing (and losing) their genetic uniqueness has given the HGDP added urgency. This sampling project has become controversial not least because of an obvious apathy towards indigenous community rights and the issue of prior informed consent or towards evolving ways and means of apportioning the tremendous commercial profits likely to result from these endeavors.
Here international law comes face to face with the prospect of an international scientific research project threatening accepted notions of the sovereignty of Nation states, their peoples and resources. This project which may be viewed as another materialization of the phenomenon of transnationalism exacerbates issues of "just" economics and resource-use in an inherently unjust world. The tremendous commercial concerns linked with an endeavor of this sort wherein parts of the genome may be subject to private ownership and control is widely viewed by indigenous people as a further affront to their dignity and autonomy (6).
Of the fact, that the controversy is
snowballing there is no doubt. The ambiguity to a certain extent
lies in the nature of the rights alleged to have been abused.
Thus the definitional discourse on human rights, problematic
as it is, provides the backdrop for any analysis of the issues
Nature of the Human Rights in Question
By far, the most singular aspect of human rights is its claim to universalism which continues to remain an elusive and contested concept. Yet the difficulty in defining and demarcating these rights has in no way diminished its importance in shaping policy options of Nation-states (7).
Diversity of indigenous cultures fulfills a basic spiritual and psychic need in giving different subcommunities an identity of their own. A recognition of the autonomous nature of such peoples is not problematic in this theoretical background but such recognition becomes a vexed issue in the context of international relations stamped with the banner of sovereignty of nations. By and large the nation-states framework has failed to provide a desirable degree of protection to the indigenous people, be it collective cultural rights or territorial rights. These people have always emphasized their unique cultural identity on the basis of their diverse spiritual and material experiences, often linked to their traditional territories.
The human genome is on the other hand, one of the primordial elements of the human being and is recognized as being responsible for human identity and its transmission to descendants (8). It may be argued thus that, it is this genetic core that gives diverse indigenous peoples claim to exclusiveness, a legitimacy. And that by being the basis of a cultural identity, this primordial element of the human genome allows them to view themselves as a people and hence lay claim to a degree of self-determination. This context at best gives a new dimension to the proposition that private ownership and control of human genetic materials would be against fundamental human rights and at worst seeks to make sure that the indigenous community that has 'cooperated' -with the cause of medicine and science be acknowledged in tangible material terms. In this background the evolution of a binding ethical and legal regime over becomes imperative if the majesty and objectivity of science are to be retained.
Much of the ethical issues and probable
solutions are anecdotal in their occurrence, no more than can
be expected for an endeavor targeting humankind in its entirety.
Thus it becomes essential to touch upon the events that justify
the raising of such issues.
Control, Ownership and Access to Genetic Resources
Among the most vocal critics of the HGDP are environmentalists and groups in developing countries, who are veterans of earlier campaigns to challenge the increasing control over the world's food crops exercised by a relatively small number of large and mostly western-based agricultural and seed companies. Thus concerns about collection of human genetic diversity stem inevitably from similar controversies related to collection and storage of plant genetic diversity over the past few decades. It would appear though that in certain quarters a strong case is being made out for the 'exceptionalism' argument for human genetic material (9). This inevitable of man's view nature and his persistent egocentrism.
Many provisions of the convention on biological diversity adopted at the Earth summit addresses (albeit imperfectly) issues related to control and ownership of genetic resources particularly with regard to indigenous people. All the same it would appear that the present and emerging international legal regime that sets the stage for the growing battle over the control, access and ownership over human genetic materials and information has a distinct first world, profit-centered orientation (10). This no doubt reflects the interest of the players in the field itself. In this context there is evidently a growing demand on part of many of the ethnically distinct groups, predominantly in the third world to be recognized as legitimate associates in this game of science and profit as being played by transnational corporations with their venture capital.
The unprecedented commercial profits expected from medical investigations in and from the biological material derived from indigenous populations groups is clear from a few instances. Blood samples drawn from the asthmatic inhabitants of the remote South Atlantic island of Tristan De Cunha were sold by researchers to a California based company, which in turn sold rights to its as yet unproven technologies for asthma treatment to German giant Boehringer Ingelheim for $70 million (11). Again, the rights of a gene associated with obesity were sold for $70 million (12). These examples though an extreme are by no means unique. Understandably indigenous groups not taken into confidence by those involved in the human genomic diversity endeavor are incensed. For these peoples, the issue of DNA sampling by Western scientists, and the increasing involvement of pharmaceutical corporations brings back disturbing memories of the colonial past. These people whose cells the samples are taken from have an uphill task legitimizing their claim to a cut of the profits, let alone laying actual claim to it given the present structure of International law and its institutions. That the indigenous peoples of Asia-Africa view the events of genomic diversity research as a form of 'biocolonial' aggression (13) is a matter of extreme importance to the efficacy of an international law based on the will of the international community. As recognized very early on it is only natural that their hostility towards a colonial past spills over to events that appear to echo the harrowing past.
Until recently the tendency in India has been to dismiss these concerns as futuristic. The media has been slow to catch on to the issue of human genomic diversity, given that a number of communicable diseases linked to poverty appear to be of more pressing nature. But these concerns have been squarely brought home by activities like that of the Center for Ecological studies at the Indian Institute of Science which used to send blood samples of various groups - including high caste Brahmins, low caste Harijans and of a hunter-gatherer tribe called 'Kadar' to population geneticists at Stanford University. But the future supply of such material on the part of the center is unlikely, as the Center is awaiting the Indian government's policy-position (subsequent to its decision to sign the GATT) on the patentability of human genetic material (14). Any attempt at protecting access to human material seems futile given the relative ease with which a sample may be smuggled out of the country, perhaps in just a small vial. Thus the statement from UNESCO after the South-North Genome Conference (15), expresses the concern and belief of the Indian scientific community that the country's unique resources of genetic diversity are being pillaged from abroad (16).
If the enumerated events speak for anything
it is that the legal battle lines over the control, ownership,
and access over human genetic material has been drawn across clear
rich-poor, North-South divides. An analogous, if not similar
dichotomy is also apparent in the ethical debates surrounding
the access to human genetic material for purposes of profit and
Articulating a New Morality
The indigenous knowledge systems are treasures of enlightening in formation, was a fact known but seldom acknowledged. Herein lies the significance of Article 8(j) of the Biodiversity Convention which calls on countries to protect and promote the use of indigenous knowledge (17). Thus when indigenous peoples voices proclaim that to appropriate human material is contrary to their view of nature and of man's place in it, that it violates their deepest sense of morality, it would appear that the world has made a commitment to listen if not understand them.
The Declaration of Indigenous peoples of the western hemisphere regarding the HGP by indigenous groups of North, Central and South America (9th February, 1995) may be categorized as an alternate source of beliefs. Such beliefs are decidedly not a recent synthesis, rather it is the articulation in an international context of these that are new. Although by title the Declaration is confined to a limited geographical area, spiritually and materially it finds an echo in the voices of indigenous people the world over. Given the present political traits of international law, it remains to be seen whether such enunciation of a "new morality" will move from the confines of the rhetoric to become the premise of the emerging ethical and legal regime over human genome research.
The Declaration begins with a recognition of their responsibility as indigenous peoples to ensure the continuity of the natural order of all life to be maintained for generations to come. It draws a distinction between indigenous and non-indigenous forces which have accompanied colonization and 'recognizes' in the latter's intentions an agenda to appropriate and manipulate the natural order for purposes of profit, power and control. In a decisive stance, the Declaration rejects all programs involving genetic technology, particularly the HGDP, as an absolute violation of the principles of creation and the identity of each life form in that natural order. Instead of allowing such vehement approaches to go unaddressed there is a need to reach an acceptable compromise, lest the 'Progress' of science be thwarted.
Bolstering such attitudes even in the
West itself is the fact that religious bodies too have in the
recent times been fostering studies on emerging issues implied
by gene technology (18). The search for alternate sources of beliefs
has become imperative as the very diversity of issues belies any
reliance on a single philosophy or doctrine. It would be profitable
in this context to refer to an observation of historian Lynn White
when he expressed that "Both our present science and present
technology are so tinctured with orthodox Christian arrogance
towards nature that no solution for our ecological crisis can
be expected from them alone".
The adventure of man's endeavor today has been brought out in all its uncertainty by Bronowski in his famous television series. Thus the ascent of man is always teetering in the balance, there is always a sense of uncertainty, whether when man lifts his foot for the next step it is really going to come down pointing ahead (19). The distinguishing feature of many innovations in biology and medicine is that they can contribute mightily to the betterment of the human condition now and in the future. More than ever before we must be alerted to the fact that our moral obligations extend beyond ourselves to the generations that will follow us. This future cannot be one that does not take into account some of the most populous and poor regions of the world in all their genomic diversity. Much of the vehement objections raised to the HGP may be traced to a denial of partnership status to ethnically diverse indigenous people who are naturally incensed at their exclusion at all stages. What most third world nations and their governments are seeking (not necessarily in unanimity) is that in turn for their cooperation they be allowed to enter into formal collaboration with the human genomic diversity studies and benefit from the scientific and possible commercial benefits likely to arise.
Admittedly the moral coefficient of the law is likely to be at its most evident when laws change. The protests of indigenous peoples and their claim of violations of human dignity in light of the HGDP highlights this dialectical shift in morals. Technological advances and international law do not confront themselves in a vacuum but operate within and impinge upon the international political system. Thus unless the present generation of "decision-makers" in an realistic power framework wants to fall prey to the allegation that they excluded more than half of the most needy of humanity from the awesome science that promises to lay bare all of man's potentialities and limitation in its ultimate certainty they must formulate means and methods of apportioning to them the benefits of these endeavours in more than just rhetoric terms (20). All that they ask is that they be acknowledged in material terms as collaborators and contributors to such knowledge. Nobody with any sense could deny them that.
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