Value of Life: Saving Genes versus Saving Indigenous Peoples

Author

When first approached to contribute to the debate on the patenting of human genetic resources or cell lines, the first thing that came to my mind was the Human Genome Diversity Project (HGDP) which proposes to take genetic samples from endangered indigenous people in order to uncover and utilize their genetic secrets. This project, we are told, is in its development stage and has yet to start its real work. It is very clear that this project means to exploit indigenous people through the use of their genetic secrets, but cares very little about whether they live or die. The project has very little interest in helping these people to survive, or in addressing the social, the economical, the political, and the exploitation issues that endanger these indigenous groups of people. It does not say how it is going to use the information gained on their genetic make-up and their secrets to change their endangered status to a state where they are no longer endangered and can continue to ensure that their identity, their culture, and the environment and sustains these are guaranteed. It also says nothing about the issues that brought about this state of affairs amongst indigenous people.

Very little is known about the Human Genome Diversity Project in Solomon Islands. The case that is known to Solomon Islands is that of the Hagahai man of Papua New Guinea. The information on the application to patent a human call line derived from a Solomon Islander first came out during research conducted in support of Papua New Guinea's opposition to the Hagahai patent. The information on the patenting of Solomon Islands human genetic cell lines has not been fully explained to the public. The Solomon Islands government is doing what it can to prevent patenting. While it is important to tell people what is happening, in this case a sense of responsibility is needed because of the implication it has on our people seeking the medical help that they most need. Our people have now come to accept that they need to give samples to hospitals for the diagnosis of their sickness. But, if they thought these samples would be used for other reasons they would be unwilling to give the samples and would stay away from hospitals even when they become very sick.

The extraction by the Westerners of DNA from indigenous people without fully informing them, getting their consent and the consent of the government that looks after them is immoral, undignified, unethical, and disrespectful. With these sorts of activities it is very hard for us to come to terms with the so-called "civilized" West and why they have very little regard for the very core of a person's existence of life.

Many times it is the current economic development strategies and undertakings that have endangered the survival of the indigenous people and their culture through the destruction of the environment, the introduction of new a lethal diseases, and many others. Quite often the economic development carried out by foreign companies fails to include an evaluation of the social impacts of these developments as they would normally do in their own countries. These considerations are often left behind. One simple example to illustrate this point is that in many of the developed and developing countries there are rules and regulations that govern the cutting down of the forest or a tree in one's backyard. A person may own the property but for him to be able to cut down a tree to begin any development, he needs to apply to the proper authority to ask for permission. Sometimes, he may have to pay a fee for this or may end up not being given the permission to cut that tree.

In Solomon Islands it is these types of development that will end up making the culture, the identity, and the indigenous people become endangered. If it is the intent of those who are involved in this program that, through its proposed activities and the gain thereof, resources will be made available to tackle the issues that have endangered indigenous people in the first place, and that the results - and whatever material developed through the development of these discovered genetic secrets - will be made available to saving mankind worldwide, free for charge, it must be explained, and some legal framework put in place, to ensure that every party involved abide by these terms fully. At present, this is not the case and from the point of view of an indigenous person, the program is for the benefit of a few scientists who have failed to learn from what is already happening to the indigenous people who are being exploited and who gain very little or nothing at all from such experiments. These groups of researchers most probably do not know who they are, where they come from, and what they are. They have very little respect for people's dignity, moral standards and culture. They have no real interest in whether indigenous peoples die or live, or in changing their status to improve it from what it is at present. Indigenous people know who they are, where they come from, what genetic traits are in their families, and have always known where they are going. The problem at the present time is having enough knowledge to cope with the newly introduced ways of life, sickness, and social problems, problems associated with new way of economic and political development, and from being exposed to the wider world. Solomon Islands: A Background History

Recently, patent applications for a human cell line derived from Solomon Islanders were filed both in the United States of America and abroad. Solomon Islands was also informed that under the laws of the United States Government and many others countries, subject matter relating to human cell lines are patentable and there is no provision for consideration relating to the source of cells that may be the subject of patent application When one considers the Human Genome Diversity Project and the laws of the United States of America, and those of many other developed countries, it is very clear that the interest is in the perceived profits and not the endangered indigenous people. For those involved to understand why indigenous people are opposed to these, one needs to understand where we come from.

Solomon Islands has a wide range of social and cultural factors resulting in the development of a rich mosaic of people and tradition. While they may differ, Solomon Islanders all have one thing in common. This is to protect the life, the indigenous knowledge, and resources of indigenous people.

The largest group of people in Solomon Islands are the Melanesians. Solomon Islanders still live with their kin in small villages on their tribal land and practice subsistence agriculture, fishing, hunting, and pig-raising. Rule was by custom as clarified by the chiefs and the village elders, collectively. However, on some of the islands, chiefly lines or extended families exercised a wider authority based on a reputation that was achieved through success, influence, and wealth.

The Melanesians occupy the large islands and, although they are of the same racial group, the traditional social, political and economic structures, and the norms vary from island to island and from tribal group to tribal group. These are flexible, unwritten, and come into play when and if needed. They are flexible basic requirements for survival. Human dignity, morality and respect are guaranteed to all the members of the family, tribe, and community. The priority in this social structure is security within the family, the community and the tribe, the members' wives, and the land and environment that supports this life. Importance of the Family

The complex of kinship, obligations, land access, and human resources access are the basis of life and the social organization. The family is the principal building block or center of attention, forming the basis for clans and language groups. The substance of social identity is the relationship with one's relatives through blood. Where women are concerned, therefore, it is important to understand and respect that a blood relationship is regarded as an unbreakable tie and social security for future generations.

Before the arrival of the Western World or culture, Solomon Islanders put great value in knowing exactly their genealogy and whether or not they were born of the woman or man in their tribal groups. This ensures traditional, social, political, and economic security for each member of the family, within the family, within the community, within the tribe or clan, and with other tribal and clan groups. Human parts and anything that has come in touch with the human body, before or after, are very well protected to prevent them from falling into the wrong hands and being used by others for gain or to kill. The system is very complex and may give life, but also take life.

It is the duty of all mothers to guard their children from birth until they can look after themselves. Most importantly, they also know exactly in which particular place within their tribal land or that of others their dead are buried. When a woman gives birth to a baby, the afterbirth is buried. The burial place is marked, and a fire is kept burning for a period of two weeks to ensure that no animal or man digs up the placenta. Later, beetle nuts and Canarium nuts are planted to mark the place of burial. To the extent possible, women give birth on the land that belongs to the family. In Choiseul the woman is known as the blood of the earth. Women have the very important role of ensuring that life, and the land which supports that life, is respected and looked after to ensure that it is available to the future generation. Women used to be valued much more highly than they are now. In the past, women were allowed to take part in discussions and decision-making in all aspects of development and the social well-being of the tribe. Since the introduction of the modern ways of life, however, women and their role in society have been downplayed as a result of the interpretations of outsiders, mainly missionaries, in their published works.

When gathering food the land and sea, over-harvesting is avoided to ensure that the next generation finds the land and the sea as you find them. Not all planned crops are harvested. A percentage is left as a thanking to the ground or earth. If two fishes are together, only one is taken while the other is left for the next generation. In brief, in our tradition there is a sense of responsibility, caring, and sharing with the people we live with and with the environment that we live in.

In Solomon Island human life and the land and the environment that supports that life are the two most important aspects of our culture. Solomon Islanders identify themselves with their family, their tribe, their land, the birds and the animals in the forest, and the fishes that live in the rivers, the streams, and the seas. Everyone is born an individual and in most cases they do not carry the surnames of their fathers. Traditionally, it is believed that there is a much higher power, despite the selection that is sometimes done at birth - where twins may be killed and where parents avoid marrying their son or daughter into a family that is known to produce twins. It is, therefore, regarded as fair that everyone be guided from birth but that what they finally turn out to be will depend on what they want to be. If one of the children turns out to be bad, the parents should not be held responsible, nor should the rest of the family. It is also believed that if the parents are bad, it is not necessary for the children to be bad as well, because the whole community is responsible for their up-bringing. Children are given every opportunity to become good members of the community. The disabled ones are members of the community. They take part and are included in every activity that is being carried out in the community. Indigenous Knowledge and Genetics

There may be no word for "genetics," but our people have a good and accurate idea about heredity and genetics. We know that inbreeding brings about week blood and disability, and there are very strict rules about this. For this reason there are not too many disabled people.

Because of this understanding there is selection as much as possible to prevent having twins, baldness, and marriage between immediate family lines. It is traditionally believed that these marriages will bring about sickness, bad luck, weak children, and children who are disabled due to the mixing of the same blood.

Therefore, it is not correct to assume that indigenous people know very little about genetics because they do not have a piece of paper that says they have studied the subject from some university. The difference between those that have the university papers and the traditional experts is that traditional experts respect human dignity and life. They also believe that only those who have anything to do with the genetic make-up of that life may claim any benefit from it or may make bay decision about it. Sanctity in Life and in Death

When a man or a woman is born, he remains part of that family or tribe in life and in death. AT no time does he cease to belong to his parents, his community and his tribe. Before the white men came, it was very unethical and immoral to take a part of any human being, be it blood, hair, nails, salvia, or clothes. There are very strong customs about this and they are regarded as so important that no one may put a stick through anyone's footprint at the beach or put a fire to another person's excrement. The dead are burnt, too, and the grave is protected over a period of time to prevent anyone digging up the body or using any parts of that human body for any purpose. If known and proven in such a crime, one could end up being killed or being made outcast from the tribe. The only people that the community or individuals have entrusted with their blood and any parts of their bodies (for the purpose of finding out what is wrong with them so that they can be cured or a treatment can be provided) are the medical people. It took us a very long time to accept going into the hospital and giving samples away. In the early parts of the malaria program everyone had to go on the mass drug administration. A blood check-up was simply not accepted unless it was done by an expatriate. It is because of this scenario that I am opposed to the Human Genome Diversity Project and the patenting of human genetic resources or cell lines. It pays no respect to our dignity, culture and identity, and at the same time it will eventually turn our people away from the medical help that they need. Conclusion

The views expressed in this article do not represent the views of a government or those of a group. It is the view of a woman, who is also a mother, who opposes the Human Genome Diversity Project and the patenting of human genetic material with a view to gaining a lot of profit. As a mother, the genetic make up of my children or any human being should remain his until death. If it must be used to save live, any profits raised from it should go into improving the system that is in place within these countries to save life, free of charge. With a society (Western) that has lost its culture, I do not think that they will bother or begin to see the issues that are involved in this question. For Solomon Islanders, however, the traditions and customs that protect the sanctity of human material - be it blood, cloth, saliva, or mucus - are very strong.

While there is concern to saving the world from diseases through the understanding of these activities, it may be this type of meddling that has brought about these diseases in the first place. There is a need for a better arrangement for this, whereby the program is closely monitored maintains a high level of confidentiality, and distributes benefits world-wide, free of charge. If benefits must be commercialized, then those donating the samples must be fully informed before the work begins, must be given the information, and must share in the benefits. We are willing to help in this area of research but object very strongly to how it has been carried out and to how those who are involved are calling themselves "inventors."

We already know so much about our environment and biological diversity we have in it, but we continue to destroy this and talk about it only when it is already too late. This approach to environmental conservation is no different than what the so-called civilized world is doing with human resources. We acknowledge that there are people who are concerned about our survival and our culture, like we are concerned, and it is in this area that more resources are needed. In our tradition and customs, we believe that anyone collecting human parts, and things that have come into contact with the human body, intends to use them against that person to ensure that he does not survive. In this HGD Project our present interpretation is the same. It has been our most costly experience that the more information and destroy them. We are country where there is very limited modern technology, facilities, and educated people in this area, and we need to be assured that our genetic material will not be used to destroy us. Already, the removal and utilization of our natural resources has not put us in any improved position, but has benefited those outside our country. We are much worse-off now, despite all the large-scale development. The only thing we have left and can call our very own is our genetic make-up. When this becomes the property of another body through a government that takes no part in our daily life and has no involvement at all in the composition of our genetic make-up, we are no longer safe from being exterminated or from being exploited to the point of non-existence.

We have seen and experienced the benefits (cures and treatments) of medical research and accept that there may be a vast potential and benefits in discovering and using gene technologies to cure and treat human diseases. We will be quite willing to assist in this area, but we do not think that human genetic material is patentable, nor is it a fitting subject for the Biological Diversity Convention at this point in time and in this manner. We believe that exclusive monopoly and control of genes and gene products will frustrate or prevent innovation and the exchange of information, and well increase the cost of medical care or health care. There is a need for an international legal framework and protocols to address the present situation and put in place one which will protect the rights of indigenous people and communities - and human subjects all over the world - from patent claims and unjust commercial exploitation.

The world, through its human rights activities, views the monopoly, manipulation, and control of human beings as unacceptable. To allow this to happen to human genes or genetic material is much worse than being colonized. It makes decisions on who owns life and who controls the debate on the enormous social, ethical, and economic implications of the privatization and commercialization of human genetic information. The fact that there is very little public debate or awareness on this by those who are involved before decisions are made to patent human genes, or even collect human genes in this manner, is a matter for grave concern.

For an outsider to come and tell us that through patenting we will safeguard our rights as Melanesians and that we will not be exploited indirectly says it all in a nut shell. These people are taking from us the one thing that we value the most, in order to exploit us and gain from us economically, but they have very little interest in whether we live or die. We are willing to assist in the advancement of human life, but not in this manner. Article copyright Cultural Survival, Inc.

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