Read more

Read more

I have a particular interest in culture-syndromes, these strange symptoms and medical problems which only emerge within particular groups of people. I believe they show, along with the placebo effect, that nature and culture develop together - particularly through the cultural power of suggestion, habituation, expectation and association.

Culture-bound syndromes were not discussed in the literature as a separate phenomenon until the 1950’s and 60’s. The work of Pow Meng Yap, a professor of psychiatry from Hong-Kong, was instrumental to the concept that certain mental disorders arose within particular cultural groups and settings: “rare, exotic unpredictable and chaotic behaviors at their core among uncivilized people”, these included koro and latah. I have discussed a few examples in my writings, including Hmong sudden nocturnal deaths and the French psychiatric idea of bouffée délirante - described as an acute psychotic disorder, characterised by:

an acute, brief nonorganic psychosis that typically presents with a sudden onset of fully formed, thematically variable delusions and hallucinations against a background of some degree of clouding of consciousness, unstable and fluctuating affect, and spontaneous recovery with some probability of relapse

I’ve also written about cultural beliefs such as having sexual intercourse with ‘spirit-spouses’ or ‘shaman-spouses’, as well as mass panics of being sexually assaulted by spirit creatures while asleep. To me these all have in common that a person raised within a particular culture can expect certain things to happen, even if they make no sense to others.

Read more

Outside of academia there was also a rush to begin patenting and commercialising the new opportunities that biotechnology offered. Private laboratories, pharmaceutical industries and health companies moved into this new wild west, and began mining the frontier’s edge for all it was worth. This is the story of some of that history, culminating in one of the most extraordinary national events - the moment when Iceland essentially sold off its genome, and the incredible fruit that gamble bore.

Indigenous Blood and Academic Treasure

The quest to crack the human genome began in 1990, involving 20 different research institutions and companies, mostly based in the USA. One of the initial questions faced by the scientists was, “whose genome are we going to sequence?”. The majority of the DNA used for the Human Genome Project actually came from a still-unknown donor in Buffalo, New York. But the issue of natural human diversity was already in the air, and in 1991 a Stanford population geneticist called Luigi Luca Cavalli-Sforza began a second project, entitled - the Human Genome Diversity Project - which was an independent attempt to collect genetic information and cell lines from the widest possible range of human groups:

To investigate the variation occurring in the human genome by studying samples collected from populations that are representative of all the world's peoples

-1994 HUGO (International Human Genome Organization) Summary Document

The project was explicitly grounded in anti-racism and attempted to create an ethical model to sweep up and capture all the other genetic work being done with indigenous people around the world, to be the standard of best practice and a transparent organisation for human good.

Human history and the human present is full of racism, xenophobia, hypernationalism, and other tragedies stemming from beliefs about human populations. In the past, some of those tragedies have been perpetrated by, or aided by, the misuse of scientific information. A11 those involved in the HGD Project must accept a responsibility to strive, in every way possible, to avoid misuse of the project data, (emphasis in original).

The study of human genetics did not create hatreds between different populations, whether based on "race," ethnicity, religion, or other grounds. It is unlikely to end it. But it can defeat efforts by racists to enlist "science" in their causes

-The Alghero Report & Model Ethical Protocol (HGDP)

Almost immediately the project was attacked by the Rural Advancement Foundation International (RAFI) - a group which was to have great influence and success organising against GM and nanotechnologies. They published a fairly comprehensive rebuttal of the Human Genome Diversity Project, breaking down their critiques into problems of ownership, compensation, intellectual property, racism and future threats to the different groups. The Project had indeed selected over 700 different ethnic and tribal peoples to be sampled, and for each group there would be around 50 samples - made up of a cheek swab, hair cuttings and a blood vial. White blood cells would be stored indefinitely.

Despite this, the project did go ahead and was moderately successful. Over 50 groups were sampled, and nearly 150 publications have made use of the data in one form or another. A similar private venture was begun in 2005, the Genographic Project, which was a joint enterprise between IBM and National Geographic. With the advances in DNA sequencing rapidly picking up pace, they seemed to be more successful, and over 1 million people participated as donors around the world.

Both the HGDP and the Genographic Project faced opposition. The latter was criticised by the Indigenous Peoples Council on Biocolonialism, who - amongst other things - were concerned that scientists wanted to discredit or undermine indigenous traditional origin stories by proving their ancestors had arrived from somewhere else. They issued a collective statement rejecting the Genographic Project and recommended that no indigenous group cooperate with the researchers.

This was easier said than done. Although many groups did indeed reject the offer of money for blood samples, some did not, and they often had good reasons. One such group were the Uros people of Peru. This tiny tribe live on floating reed islands on Lake Titicaca, and consider themselves to be the oldest people in the Andes region. Their history with their neighbours was not a happy one, having been invaded and displaced by both the Inca and Aymara. Up until recently their marginalisation made them almost indistinguishable from poor Aymaras, and they took to harvesting reeds on the edge of the lake, building islands to keep themselves safe.

In 2008 they were given the opportunity to test their claim that they were an ancient people when representatives of the Genographic Project offered to sample their DNA:

During this meeting, the geneticists had excellent news for the Uros: their research revealed that the Uros conserved a significant differentiated genetic component in their DNA, which was probably derived from the ancient Urus. The Uros participating in the meeting greeted the news with much enthusiasm. Mayor Julio Vilca, one of the main articulators of the Uros’ differentiated ethnic identity, argued that this research could become of great help in the campaign for their rights… After the meeting, Mayor Vilca gave several interviews to local and national media, in which he claimed that ‘scientists of National Geographic² have just confirmed that I am Uros indeed, and that my people are the most ancient people of the Andes’.³ Thus, Uros authorities immediately enlisted the genetic results in support of their claims to a differentiated ethnic identity.

-The importance of being Uros: Indigenous identity politics in the genomic age (2013) Michael Kent

The power of genetics was on full display, as anthropologists and politicians scrambled to recognise the Uros as a distinct ethnic group with a legitimate claim to their lands. Interestingly their lands turned out to be the lake, of which the Uros managed to secure 40% to themselves, angering other groups who foddered their cattle on the same reed beds.

The Uros were not the only example of indigenous people using the Genographic Project to their own advantage. The north American Melungeons and Seaconke Wampanoag, the Amerindian Charrua, Krenak and Pataxó and groups from both India and South Africa looking for lines of Jewish descent all wanted validation of their identity through the medium of DNA.

Lies and schizophrenia

Even whilst the representatives of the Human Genome Project were workshopping their ethical codes, a controversy was brewing in Arizona that would have huge implications down the line. The Grand Canyon Havasupai Indians had been talked into donating blood to a geneticist called Dr Teri Markow by an anthropologist, since they were all coming down with diabetes at an alarming rate. What happened next is so murky and complicated it will never be solved, but we can piece together a few things:

• Dr Markow received a nearly $100,000 grant from the NIMH (National Institutes of Mental Health) and the NARSAD (National Alliance for the Research of Schizophrenia and Depression - now called the Brain and Behavior Research Foundation) to conduct genetic analysis into the dopamine receptor gene.

• Markow and colleagues presented the Havasupai with a vague medical consent form, much of which was difficult to translate accurately

• The blood samples were analysed for generic HLA immunity gene frequencies, and a paper published in 1993

• No publications or research data about the Havasupai and schizophrenia or depression were ever published.

This is confusing stuff. As far as the Havasupai were concerned they had donated blood for research into diabetes, but Dr Markow had received a grant for work on mental health disorders, which she did not tell the Havasupai. But she also never used the blood for any mental health research.

In 2003, Carletta Tilousi, a Havasupai tribal member, was invited by an anthropologist to a doctoral student presentation at Arizona State University. As she listened to the young man excitedly discussing DNA microsatellites and populations genetics she raised her hand - “how did you get permission to use Havasupai DNA for your research?”

Read more

Read more

Read more

Read more

The story I want to look at here is a unique example of selective breeding which seemed to defy the basic commandments of evolutionary biology - the compulsion or instinct to procreate. The tale is a sad one, of a dog species developed to become the ultimate fighting machine, at the expense of all the beauty of that creature. But it also should remind us that biology is a study dominated by exceptions, and even the most fundamental rules can be broken. Whether you see this as a natural or unnatural phenomena will probably depend on your own philosophical position about Life and what constitutes Life.

Read more

Read more

We’re all horribly familiar with militia groups, paramilitary and mercenary units and terrorist organisations committing violence in the name of some ideological or religious vision, but we are less …

Read more