On a somewhat different note, a new book has appeared that describes numerous unpleasant interactions between academics and indigenous people (people who through geography and culture have remained relatively isolated and have not generally mated with other populations).
A number of academic-led and/or big-company-funded research projects have arisen to study the genome of the world's indigenous peoples, in the hopes of identifying rare genes that confer immunity or susceptibility to certain diseases, better understanding genetic mechanisms of disease, shedding light on migrations of people throughout the ages, and other lofty goals.
Project examples include the now-defunct Human Genome Diversity Project ("an international project that seeks to understand the diversity and unity of the entire human species") and the Genographic Project ("a landmark study of the human journey").
Unfortunately, while the researchers and companies involved in these projects have made and published promises that the cultural and property rights of the indigenous peoples studied would be respected, both at the individual and group levels, these promises have not been kept. It seems scientific arrogance, paternalism and moral relativity have created quite a number of unpleasant interactions between sponsors and subjects of these studies.
This seems yet another playing field for people in biomedicine who cannot seem to understand the world does not revolve around them.
"Pacific Genes and Life Patents, Pacific Experiences & Analysis of the Commodification & Ownership of Life" is a new book edited by Aroha Te Pareake Mead, Faculty of Commerce & Administration, Victoria University of Wellington, New Zealand, and Steven Ratuva on this subject. It is available as a PDF (11 MB) via this link.
As a result of my past interest in this topic, I received the link to the book as well as the following from Aroha Mead:
For several years, indigenous groups have taken issue with scientists studying their DNA. When National Geographic began collecting DNA samples for The Genographic Project , the Maori of New Zealand along with Alaska natives feared that DNA evidence would invalidate their history and break family ties. Aroha Mead and Dr. Steven Ratuva have put together a volume of essays, entitled Pacific Genes & Life Patents , that examine how Pacific Indigenous communities have been affected by genetic research and products, and patents on life forms. The book is available for free online from the following website: www.earthcall.org (Publications), www.ias.unu.edu (Latest Publications).
The editors and authors of Pacific Genes & Life Patents present articles, case studies, and other information which show that “outsiders” are predominantly interested in harvesting genetic information for profit without any regard for Pacific cultural values and norms.From the Preface:As a region, the Pacific has experienced more than its fare share of external experimental research that has resulted in the commodification and misappropriation of important components of their ancestral inheritance. For others, it might be difficult to understand how a plant could be regarded as a living ancestor, or that human blood retains its life spirit even after it has been collected for medical research and synthesized and isolated for specific DNA qualities. Such values are still very much a part of the daily lives and analysis of Pacific communities.
More at ABC Science Online , March 20, 2007
In the past, I'd worked on the Yale-Saudi collaboration in clinical genetics, along with one of the principal researchers of the Human Genome Diversity Project. The HGDP project during that time period was being subjected to objections by many of its intended subjects. The principals promised to respect indigenous peoples' rights, and I believed that at the time.
Unfortunately, the underhanded attempts of the HDGP project leader I was working with to misappropriate my own intellectual property, a computer program I authored, while at the same time promising to respect the right of indigenous peoples, struck significant doubt in my mind (see this story from Yale, about halfway through where I document the actions of this Human Genome Diversity Project principal investigator at Yale, a participant in a series of rather revealing ethical lapses at that university).
I emailed Aroha Mead to let her know I supported her book, and gave her a link to the above story, an earlier version of which I had forwarded some years ago. I also agreed with her that it was unwise to trust researchers such as in the Human Genome Diversity Project. As I do not generally write such things behind people's backs, I cc'd my email to the International Executive Committee Members of the HGDP as listed on their web page.
I received this condescening, dismissive, paternalistic reponse from one of them at Stanford:
If you are able to say in English what your complaint is and against whom you are complaining, and on whose behalf you are complaining, in one or two paragraphs, you might find that people are willing to read it. As it is your message is so hidden and confused that it is not interpretable.
This person clearly did not have time of day to read my email, nor my Yale web story. I simply replied that:
If you find my several-page web story "confusing and not interpretable", one can only imagine how you would find Aroha Mead's book "Pacific Genes & Life Patents."
I think the response I received is a "poster example" of the arrogance, lack of values and lack of humility in a significant sector of the biomedical community, especially at major universities and the corporate sector. The abuses that then affect patients, ethical scientists and clinicians, and others (such as the indigenous peoples whose voices are heard in this new book) are the result.
Here is a more detailed book description:
Hand off Our Genes, Say Pacific Islanders
Pacific Islanders are demanding the power to restrict patenting of their human, plant and animal genes, even if they run foul of international patent laws.
A new book documents 16 'acrimonious' encounters between scientific researchers and indigenous communities and calls for Pacific states to take a united approach to gaining control over such patents in the region.
"Researchers are harvesting and patenting the Pacific region's genetic resources by simply gathering and taking ownership over almost everything in their path," says co-editor of the book, Aroha Mead of the Victoria University of Wellington in New Zealand.
She says lack of regulation and a lack of knowledge about the latest genetic technologies and intellectual patent law has made the region a major target for commercial gene hunters.
The book, Pacific Genes & Life Patents , is published by international indigenous activist group Call of the Earth and the United Nations University in Tokyo.
The book says a major problem is that communities involved in research often don't give informed consent.
It documents an early example in which the US government filed patents on material taken from the Hagahai tribe in Papua New Guinea and the Solomon Islands in the early 1990s.
As a result, says the book, Hagahai immune cells can be bought today from the American Type Culture Collection for U$216, despite subsequent objections from those involved that they had not been informed.
The book documents other cases in which researchers gained consent from people who were not representative of their community. This resulted in conflicts within the community and the community's eventual withdrawal from the research.
Scientific research and patenting can often offend deeply held cultural values, says co-editor Dr Steven Ratuva, of the University of the South Pacific in Fiji.
He says patents on genes in medicinal plants conflict with the traditional view that such plants are common property, available for everyone.
While fair compensation for exploiting indigenous knowledge can be important, there are other issues at stake, says Ratuva.
"It's not only a matter of money," he says. "There are certain aspects of the culture which a lot of communities think cannot be bought or sold.
"Plants and animals are not seen as mere physical or biological entities but also as embodiment of ancestral spirits," says Ratuva.
He says recognition of local people's world view, even if it appears absurd to outsiders, must be part of the process in working out any patent or bioprospecting agreements.
The book renews calls for a Regional Pacific Intellectual Property Office to vet patent applications and make sure they conform with Pacific Island cultural values.
Leaders at the intergovernmental Pacific Islands Forum say they also want such a regional office.
Mead says Pacific states should also pass laws to either prevent or significantly reduce patents on life.
But Professor Brad Sherman, director of the Australian Centre for Intellectual Property in Agriculture , says such laws would contravene current World Trade Organization (WTO) rules on intellectual property relating to plants and animals.
"It's at odds with the trend on intellectual property across the world over the last decade which has seen any prohibitions on patenting of life being removed from the laws," he says.
Any countries that contravene the WTO rules would run the risk of economic sanctions, says Sherman, based at the University of Queensland .
He says in his experience bioprospectors are often public sector researchers, who are under pressure to generate income from patenting.
And he says tough gene patent laws would not stop such researchers from taking material out of the Pacific region and patenting it elsewhere.
Mead is aware going against the tide won't be easy but is committed.
"Patents are out of control and a growing number of sectors of society are indicating that limits do need to be drawn," she says.