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.

Bioethics, Medical Research and Indigenous Rights

I have been reading a book by Rebecca Skloot, “The Immortal Life of Henrietta Lacks”.

This book traces the story of Henrietta Lacks, her family, and the cells that were taken from her when she was ill and then used in medical research. The book raises important questions about the ownership of DNA and cells, of medical research ethics in human subjects research, and informed consent. The book is riveting, well-written, and disturbing and inspirational at the same time.

Henrietta Lacks was African-American. But the bioethics questions raised about her own situation certainly resonate with bioethics questions and indigenous peoples. This is the first in a series of blog posts that will explore and address the issue of bioethics and indigenous rights.

The book, in a timeline appended at the back, mentions a lawsuit of the Havasupai tribe in 2005 raising bioethics issues not dissimilar from those raised about the cells taken from Henrietta Lacks.

A New York Times article from 2010 comments on the settlement that was reached, with “pay[ment] $700,000 to 41 of the tribe’s members, return the blood samples and provide other forms of assistance to the impoverished Havasupai — a settlement that legal experts said was significant because it implied that the rights of research subjects can be violated when they are not fully informed about how their DNA might be used.”

The problems and issues raised about bioethics and bio-prospecting and the rights of indigenous peoples remain important and unresolved issues. This 2011 article from NATURE outlines an issue involved in genome sequencing of the indigenous peoples of Australia, and further comments on the issues when human material is held in museum collections “The study also raises broader consent issues over body parts of indigenous people held in museums, says Kowal. Many collections are returning bones to these groups, but the British Museum in London, for instance, generally excludes hair and nails from its repatriation policy. Such specimens are a valuable tool for studying the genomes of people from around the world, including populations that no longer exist, argues Willerslev.”

Medical interests include not only the benefits to medical science, but of the profits that can be made from patents of human genetic material. This article gives a helpful summary of the various interests at stake and explains the role that international law has to play in an issue that combines medical and research ethics and laws and human rights:

“Beyond ethics, indigenous populations and human rights activists have found support in emerging international human rights jurisprudence on the need to protect indigenous peoples from racial discrimination and the emerging imperative of safeguarding indigenous peoples’ knowledge. For example, article 8(j) of the Convention on Biological Diversity obliges states to “respect, preserve and maintain knowledge, innovation and practices of indigenous communities and promote their wider application with the approval and involvement of the holders of such knowledge.”

What are the current legal standards? What safeguards are put in place by researchers to ensure that the standards of informed consent as well as ownership and potential profits are met? What developing standards have occurred through litigation? These are questions that future posts on this blog will address.

Written by Sarah Sargent.