pp. 205- 209 in
Bioethics in Asia
Editors: Norio Fujiki and Darryl R. J. Macer, Ph.D.
Eubios Ethics Institute
Copyright 2000, Eubios Ethics Institute
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6.2. Genetic Research and Cultural Integrity
Leonardo D. de Castro.
University of the Philippines, Quezon City, the Philippines
Genetic research on human subjects are no different from other medical or scientific researches that aim to benefit human beings by advancing the understanding of diseases and other health conditions. They are fueled by a desire to make life healthier and more comfortable for all of us. They are also characterized by a need for volunteers who are willing to take risks and make sacrifices in order to establish the validity of scientific findings. But many genetic studies differ from other researches involving human beings in the nature of the benefits that they bring about and the type of risks or disadvantages that they entail.
One cannot doubt the enormous advantages that genetic research can provide mankind in terms of cutting-edge therapies and preventative strategies for troublesome diseases. Such advantages are made significant by their radically innovative procedures. More than that, they are marked by a capability to revolutionize the nature and character of medical therapy.
Genetic biotechnology irreversibly has altered the meaning of disease
The unique character of genetic researches partly has been responsible for the emergence of a number of controversial ethical issues. Some of the researches have posed a challenge to the integrity of cultures by imposing priorities and values on people that are not in harmony with their own. The challenge needs to be addressed if we want to avoid a confrontation that could be damaging both to the advancement of science and to critical values held sacred by various groups of people.
This paper takes a closer look at the challenge by re-examining the concepts of education and solidarity in relation to cultural integrity. It makes the observation that much misunderstanding could result from insistence on medical and scientific paradigms of development that neglect values and traditions inherent in a culture's identity. To enable medical and scientific technology to proceed constructively, the paradigms of development need to be more sensitized to specific cultural perspectives.
The importance of education
The frontiers of medical genetics and biotechnology have pushed forward at such a fast pace that people have been hard put to keep up with the developments. Many individuals and groups have been unable fully to appreciate the impact of these developments on societal values and traditions. The dissemination of information concerning the new technologies has lagged behind.
Indeed, some problems pertaining to the acquisition and custody of samples for the Human Genome Diversity Project partly can be attributed to the failure of researchers properly to "educate" research subjects coming from indigenous populations. This point is too important to be overlooked:
With complex genetic concepts and discoveries coming at an ever-increasing pace, what the lay person understands or believes to be true now will help determine how such scientific advances are evaluated and whether they are accepted by the public or not. Clearly, education is the key (1).
We all know that Informed consent is indispensable for research involving human subjects. Obviously, consent cannot truly be informed unless the research subject is properly educated. But we need to be clear about essential features of the educational process if informed consent is to be considered valid.
Relating education to individual and cultural values and priorities
Education, especially on matters that are culturally sensitive, cannot be done instantly. It is not a one-way process. It does not merely involve the passing on of information from the learned to the ignorant. It does not merely mean getting a person to believe what was not previously understood or explained adequately. It involves much more than causing acceptance of the value of genomic research from the general perspective of "world health."
What education actually requires is two-way communication. A crucial component of the process is the appraisal of information within the unique framework of the participants and not merely of the researchers. That unique framework consists of values and priorities which may differ from, and even radically conflict with those of the research proponents.
Health needs that have the highest priority for urgent genetic remedies in one society may not be thought to deserve similar attention in others. This message was brought forward, for instance, in a statement made last year by Ruth Liloqula, Director of Agricultural Research of the Solomon Islands, before the Committee on the Human Genome Diversity Project of the National Academy of Sciences of the United States. She observed that the HGDP's research agenda does not match the health research priorities of her country. According to her, research is needed on diseases like malaria, not on the historical migrations of her people.
The point is that respect for persons requires that indigenous peoples be allowed to appreciate the value of genetic research and biotechnology within their own cultural framework. There is not only a single, homogenous humanity that provides the perspective for analyzing the significance of research. Rather, there are many populations with unique perspectives, specific priorities and distinct historical contexts. The opposition of indigenous groups of people to the collection of DNA samples as part of the Human Genome Diversity Project is a cultural prerogative. Any decision to participate must be attended with the same level of freedom that ordinarily is required for the recruitment of research subjects.
What this means is that the educational process must be seen as a vehicle for bridging gaps between the values and priorities of the HGDP on the one hand and the values and priorities of the participating communities on the other hand. There cannot be a presumption that one party serves as bearer of knowledge and the other serves as recipient. No party can arrogate unto itself solely the role of knower and dispenser of knowledge. No party merely teaches.
In this process, both parties are learners. For if the participating community initially is ignorant of the nature, values and priorities of the Project, the investigator also initially is ignorant of the cultural richness of the participating community. In keeping with this outlook, the educational process must proceed at a pace that does justice to the participating community's cultural identity. Its autonomous mechanism for cultural assimilation and adaptation has to be respected. Only by proceeding in this manner can cultural integrity be maintained.
The concept of solidarity has been mentioned in literature relating to genetics and biotechnology. Can it be invoked in an effort to justify the derivation of responsibility on the part of individuals or groups of people to participate in researches that serve to advance the "health of mankind?" Section E, Article 16 of the Revised Preliminary Draft of a Universal Declaration on the Human Genome and Human Rights may be interpreted to raise this possibility as it emphasizes that "States shall ensure that . . access to scientific knowledge in [human biology and genetics] is guaranteed." One finds in this provision a window of opportunity for diminishing the importance of informed consent in the recruitment process. Given this interpretation, solidarity could become an instrument for exploiting rather than protecting vulnerable and disadvantaged populations.
The exploitation could come about if solidarity is invoked to pressure people to participate where their participation is thought necessary for gaining access to important scientific knowledge. The above-mentioned document also provides (Section E, Article 14) that in pursuit of solidarity, "States...shall foster research on identification, prevention and treatment of rare diseases or endemic diseases which afflict a large proportion of the world's population." If a particular research protocol involving an indigenous population is thought necessary for identifying, preventing or treating an alarming disease, would the members of that population be bound by the concept of solidarity to participate? Does solidarity entail an obligation on the part of the minority to take risks or make sacrifices for the benefit of the majority?
As a concept of social justice, solidarity is founded on the inherent interdependence of human beings and on the need for each human being to look after the welfare of his or her own kind. Its significance lies in the protection of the weak and defenseless. Out of solidarity, i.e., out of the recognition that all are one in their humanity, the strong and powerful have an obligation to make up for the vulnerabilities of those who are not similarly endowed. On the other hand, to invoke solidarity as a way of enforcing the minority's patronage of the needs of the majority is to give the concept a coercive personality. To do so is to disturb the alignment of solidarity with the concept of justice. This is not to say necessarily that solidarity cannot generate a duty on the part of individuals to participate in research that benefits the majority of humanity. The beneficiaries of medical advances cannot dissociate themselves fully from the enterprise that makes such advances possible. If beneficiaries are to avoid being freeloaders, they must assume a duty to reciprocate benefits received. But such a duty need not nullify their right individually to assess each specific research proposal in a manner that addresses its relevance to their own value systems.
Some of the issues mentioned above are reflected in the concerns articulated to the National Ethics Committee and the Ad Hoc Committee on Cloning organized by the Philippine Council for Health Research and Development and the National Academy of Science and Technology:
1. Perceived lack of transparency [regarding] the real intentions of The Project:
a) Monetary interests rather than people's interests
b) Preservation of extracted genes rather than preservation of a people's way of life
c) High tech imperialism in genetics - developed countries take advantage of the lack of patent laws in less developed countries
2. Perceived unethical practices like the lack of informed consent from participating individuals / communities; concern that religious and cultural beliefs of ethnic communities about the use of body fluids / parts are being disregarded.
3. Lack of mechanisms to ensure return of benefits to the participants/communities
The same concerns are expressed in newspaper reports and statements that have caught public attention in the country. The perspective of one highland tribe was interesting: "After governments have harvested our flora and fauna to concoct medicines, now they want to harvest our bodies for the same purpose . . . . If they would really want to preserve us and our cultural heritage, why don't they use the billions of dollars devoted to the project in addressing the reasons for our being endangered instead?" (2)
There is nothing new about these views. People in other countries have been tormented by the same things. In various fora in the United States, indigenous groups from North, Central and South America have bewailed the large scale collection of indigenous peoples' blood and tissues and the lack of information about research being done on their cells. They have also worried about the "HGDP's lack of transparency" and about ambiguous statements issued by affiliated researchers.
Although there is no direct written evidence to show that indigenous peoples of the Philippines deliberately have been deceived about the real intentions of researchers collecting DNA samples, circumstantial evidence is available. The Department of Health, charged with the responsibility of accrediting health missions conducted by foreigners in the country, often has granted permits for such groups to visit indigenous populations. None of the requests submitted has indicated an intention to collect DNA samples for genetic research. Yet local scientists are aware that there are DNA samples taken from Filipino populations which are currently deposited in a number of laboratories outside the country. Obviously, those samples could not have been solicited in a manner that was anchored on the fully informed consent of the persons concerned. If those persons can be said to have consented at all, it must have been to a procedure other than the acquisition of samples for genetic research.
One outcome of the situation is that, as Asiaweek has reported: “Manila . . . voided on Sept. 1 all deals giving multinationals the right to isolate and patent genetic material from Philippine flora and fauna. Now, no bio-prospecting can be done without a government permit and the consent of affected communities, particularly tribal people, in whose lands abound specimens for research.“ (3)
The justification given by Delfin Ganapin, Undersecretary of the Department of Environment and Natural Resources, is that there is a need to prevent biopiracy. But there are reasons, cited by indigenous populations, that deserve equal attention. The Cordillera People's Alliance has claimed that indigenous peoples worldwide are now endangered as a result of the enforcement of laws and policies that pave the way for businesses to explore resource-rich ancestral lands. Now, even human genetic materials can be counted among such resources. The Alliance also considers the Human Genome Diversity Project sacrilegious because "it seeks to patent life forms for commercial purposes."(4) This concern about the sanctity of creation in general, and about the integrity of genetic material in particular, has been expressed elsewhere.
The Declaration of Indigenous Peoples of the Western Hemisphere Regarding the Human Genome Diversity Project issued in 1995 contains a candid expression of values and priorities advocated by the indigenous peoples involved: “The principle of harmony requires that we do not violate the principles of Creation by manipulating and changing the natural order.”
Given that our natural relationship has been interfered with by foreign or non-Indigenous external forces in a long history of destruction we have never abandoned those responsibilities. In the long history of destruction which has accompanied western colonization we have come to realize that the agenda of the non-indigenous forces has been to appropriate and manipulate the natural order for the purposes of profit, power and control. It is not merely a matter of coincidence that similar views have been held by different peoples coming from different parts of the world. They appear to be bound by, among other things, an outlook towards life that puts a high premium on their traditions and on the integrity of their cultures.
Human genome research is about the nature of human beings. But it is also about the nature and meaning of humanity itself. This aspect of genomic research makes it exceedingly significant. But this also gives it a unique character and renders it controversial.
Some of the controversies may be attributed to the threats posed by genetic research to cultural integrity. These threats require immediate attention. But there is no need to presume that these two causes are truly incompatible. To do so is to do a disservice to both.
There are great benefits to be derived from the Human Genome Diversity Project. This cannot be denied even by the Project's most vociferous critics. However, one cannot assess scientific projects only in terms of their own objectives. Commercial interests have a tendency to obscure those objectives and redefine the ends of technological enterprises. But commercial interests could not be permitted to set in and take over the process completely.
The objectives and priorities of participating communities must always be taken into account. Research projects cannot succeed unless participating communities are accorded the respect that they deserve. For the real subject of scientific undertakings is, in the end, not science itself but the people and communities that it is meant to serve.
1. Human Genome News, May-June 1995; 7-1
2. Statement issued by the Cordillera People's Alliance as reported in "After our flora and fauna, now they want our bodies," Philippine Daily Inquirer, (2 April 1997), pp. 1 & 20.
3. Choong Tet Sieu and Keith Loveard, "Magic Genes," Asiaweek (September 5, 1997).
4. Philippine Daily Inquirer, (2 April 1997), p. 20.
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