Agenda Item 5. Standard-setting: (a)

Thank you Mr. Chairman:
Excellencies, ladies and gentlemen:
It is our pleasure to have the opportunity to participate in the Working Group.
This submission is made on behalf of Friends of Peoples close to Nature Germany and a group of students of the University of Lueneburg, Germany.
On August 3rd 2005, the Sub-Commission on the Protection and Promotion of Human Rights presented their Report of the Working Group on Indigenous Populations (WGIP) on its twenty-second session. The WGIP recommended working further on the “legal commentary on the concept of free, prior and informed consent”. According to this preliminary paper on the concept of free, prior and informed consent and the ILO Convention 169, it is essential that indigenous populations have to be consulted prior to any planning of development and scientific project affecting them. The point is that no project should begin without consultation and consent of the indigenous populations. This means that any project should not be implemented without giving a fundamental understanding and the compliance of the indigenous populations (see Art. 7.1, ILO 169: „participation in the formulation“). This means also that an overall clarification of motives, objectives and consequences of those projects must be given, as far as their known.
Very often, this demand is not taken into account. For example, within the scope of the „Genographic Project“, which has the goal to take human genetic samples from all over the world in order to create a world atlas of human migration. This project was announced to public on April 13th 2005 and it is initiated by the National Geographic Society, IBM, the geneticist Spencer Wells and the Waitt Family Foundation. Referring to information published on the internet, an advisory board with ten members provides advice and consultation on matters such as funding priorities, ethical and legal compliance over the course of the project. Thereby ensuring that all national and international laws concerning human genetic sampling and anthropological research are followed before starting. An external control is managed by the Social and Behavioural Sciences Institutional Review Board (IRB).
Even non-indigenous people can participate in this project by purchasing a „participation kit“ for a minimum of 100 US-Dollars. Those participants are called upon to sample a cheek swab and to send it anonymously to the Arizona Research Lab at the University of Arizona.
In the case of indigenous people, scientists are going to take samples from them. So far, the initiators have not given clear, how this sampling is managed. It is just mentioned very vaguely that the participation is voluntary, and that advice and counsel from leaders and members of indigenous communities is sought. In regional research labs, the samples are analysed and the encoded results are sent to the central database at the Arizona Research Lab for analysis. The origin of the sample and the donor are kept on file in the regional research lab. Referring to published information, that states: any further research on the samples and any patenting on the results are banned. The samples are to be destroyed completely by the end of the project. The net proceeds from the sale of the participation kits will be directed towards cultural preservation efforts for participating indigenous populations.
According to the lack of transparency in this project, it is not clear, if and when consultations with indigenous people concerning the implementation and methology of the project was to be enacted. Also because of this lack of transparency, scientific paternalism is linked to this project. Also, the possible economic exploitation is unknown. Furthermore, the security of the indigenous participants data is not guaranteed as mentioned above.
In addition, the Arizona Research Lab, which is in charge of the analysis of the collected data, is discredited due to the exploitation of human genetic material of the Havasupai, a couple of years ago. Even, the chairperson of the project’s advisory board Mr. Cavalli-Sforza was discredited by the indigenous populations because of another well-known (discharged) project, the Human Genome Diversity Project (HGDP). The project is aimed to collect the genetic material of over 700 ethnics and to identify the origin of mankind and diseases. The legitimation for this project was the urgency to save the cell lines of threatened ethnics with the purpose of immortalization of those cell lines. From the indigenous point of view, this explanation is an insult. The result is, all but one of the chosen indigenous peoples have refused to participate and condemned the project because it treated them as scientific objects and not as human beings.
The respect of human dignity and the respect of the rights of each human being, „regardless of their genetic characteristics“ (Art. 2.a) and the imperative „to reduce individuals to their genetic characteristics“ (Art.2.b) were acknowledged through the UNESCO „Universal Declaration on the Human Genome and Human Rights“ in 1997.
For this reason, the mentioned human genetic projects are violations against agreements, under international law, for example the ILO Convention 169 and the included demand for:
“The peoples concerned shall [… ] participate in the formulation, implementation and evaluation of plans and programmes for national and regional development which may affect them directly” (Art. 7.1, ILO-C169).
Therefore, we express our solidarity with the critics given by the Indigenous Peoples Council on Biocolonialism that through the intended genetic analysis within the scope of the Genographic Project the integrity and sacredness of the indigenous bodies and their ancestors, are violated and because of this, the project must be boycotted.
We are sure that the Working Group is already paying attention to this project and therefore, we would like to express our solidarity with critical examination from the point of view of the affected indigenous populations.
Thank you!
Note: Statement by Friends of Peoples close to Nature
Germany and the students of the University of Lueneburg