Do Genes Matter?

Sarah’s last blog (here) on bioethics, medical research and indigenous peoples raises a number of interesting points. As a relatively new blogger it allows me to discuss an area I am familiar with. My research concerns the restitution of ancient indigenous human remains, ancient indigenous DNA and property rights. What you may ask has this got to do with medical research and bioethics.

The collecting of indigenous human remains in the past has been compared with the new interest in the genes of indigenous peoples. Indigenous peoples are particularly vulnerable to bio-prospecting and in turn bio-piracy. In many cases although not in all, indigenous peoples have remained geographically and socially isolated and therefore are particularly interesting for scientists interested in genetic information. There are a number of examples and Sarah mentions the Havasupai Tribe case where genetic material or blood samples in the case of the Havasupai Tribe were used in a way that was ‘culturally inappropriate’ in the indigenous sense but may have been ‘culturally appropriate’ for the researchers. Sometimes consent has been given but the implications of that consent have not been fully explained to the indigenous group giving consent.

The following statement concerns the collection of the genes of the living by the Human Genome Project a project set up in 1990. The statement although made in 1994 still resonates today.

‘The issue relating to the Human Genome Project and others relating to our genes, is a serious violation of our peoples’ rights. Without consultation with the indigenous communities, several projects are now taking blood, hair, tissue and other samples for purposes that are not clear. The practice of collecting samples without our approval is very dangerous because in this way our genetic material can be patented or used for other purposes. Such practices not only violate ethics and human rights, but also violate nature, our spirituality and our knowledge of creation that connects us with all forms of life.’

Geneva Intellectual Property Rights Workshop, August 1994

Over the coming weeks I will draw out the rights and human rights implications of this debate; such rights as non-discrimination, Free, Prior, Informed Consent (FPIC), consultation, participation, benefit-sharing and a right to culture. This discussion has wider ramifications and can be applied to other indigenous ‘resources’ as it seems to me indigenous genes are viewed through a proprietary prism and sit alongside other vulnerable resources such as land, minerals, water and indigenous traditional knowledge (TK) to name but a few.

Written by Fiona Batt.