Human Genetics: Control of Research and Sharing of Benefits

Article excerpt

Abstract: The Human Genome Diversity Project (HGDP) is a program of mass sampling of Indigenous peoples and other isolated populations, presently being conducted by teams of molecular biologists around the world, and is due for completion in the next few years. It is a process for the collection, exchange and potential commercialisation of the human gene. It operates within Australia. Arguably, the HGDP not only jeopardises the rights and safety of the peoples targeted, but also could lead to the cultural, political and social complexity of Indigenous identity and rights of Indigenous Australians being reduced to an arbitrary genetic text. Recently, we have witnessed attempts by a United States institution to patent human genetic materials taken from Indigenous peoples without their free and informed consent. Such practices underline the lack of specific national and international law on human genetic material, which allows for the commercialisation of human genome and the development of gene therapy at the expense of the human owners. Indigenous peoples and others need to be protected from such exploitation through adequate legal safeguards, including contractual arrangements and protocol statements, to guarantee privacy rights and entitlement to any medical or financial benefits arising from this research. Establishing ethics committees of Indigenous persons to monitor and approve medical research projects may be useful in protecting Indigenous communities from exploitation. Continued sampling of targeted populations without the free and informed and express consent of the peoples concerned will lead to the continuing disrepute of this project.

Keywords: Indigenous Australia, Human Genome Diversity Project, patents, commercialisation, free and informed consent, Indigenous identity, privacy rights, national and international law, medical or financial benefits, Ethics Review Committee

The Human Genome Diversity Project is `an international effort to collect, preserve, analyze, and make available genetic and ethnographic information from people all around the world' in the expectation that the project `will lead to advances in understanding the biological development and the history of our species and, ultimately, in understanding and treating many diseases with genetic components'. The project involves teams of molecular biologists from around the world collecting DNA samples and ethnographic information from Indigenous communities and other isolated populations, `thus correcting the current bias in research in human genetics toward people of European descent' (NARCHGDP 1999:1; HUGO 1993).

It is a process not only for the collection and exchange, but also the potential commercialisation, of the human gene.

In September 1995, the Human Genome Diversity Project was described as being still largely in its planning stages. However, Indigenous people in Australia, as elsewhere in the world, had had sufficient experience with the project to have developed distrust of its aims and implementation, and to have expressed concerns about its implications for them and their cultures. In January 1996, I responded to an article in a major Australian newspaper that had stated that the Human Genome Diversity Project (HGDP) threatened Aboriginal beliefs on creation and suggested that the problems of the project could be reduced to a few `public-relations blunders' by naive researchers who put Indigenous people out of sorts with the project.(1) `This analysis', I wrote of the project, 'distorts Indigenous peoples' objection to the HGDP':

   What the article fails to say is that blood, hair roots and inner-cheek
   scrapings are taken from Indigenous people under false pretenses. They are
   not informed that the blood and other samples are to be used for extracting
   genetic material, and they give their consent to no such process. It fails
   to discuss the methods of deception used by scientists in the collection of
   that material. …