Last week the Icelandic President, Olafur Ragnar Grimsson, met with representatives from Shanghai’s Fudan University in China to discuss ways in which Iceland could help with the University’s controversial gene collection project.
Iceland already has experience and knowledge of the collection of genetic data through the work of deCODE. The company has already collected samples from nearly half of Iceland’s population since 1998.
Iceland’s relative isolation and good health history records have been immensely helpful to deCODE’s work in isolating specific gene sequences responsible for certain traits and hereditary diseases. Although the project in China is hoping to accomplish similar results, it’s up against a lot of challenges.
“China has 55 officially recognised minorities, but these populations are recognised on political rather than anthropological grounds. What this project is able to do depends on how well they have characterised these samples,” said Alan Bittles, director of Australia’s Centre for Human Genetics, a group which has participated in some similar studies in China in the past.
The Chinese project is hoping to compile the world’s largest genetic database. At the moment, the bank holds samples from 10,000 people but in the next ten years, it hopes to hold some 5 million genetic samples.
However, even 5 million may be insufficient. A similar project in the UK, UK Biobank, attempted to collect samples for half a million people and follow their health over 25 years to draw conclusions. That number of samples turned out not to be enough.
“If 500,000 aren’t enough for a UK population of 60 million, what does 5 million samples mean for a Chinese population of 13 thousand million?” Bittles asks. “Don’t be deceived by the number 5 million; it’s only 0.4% of the total population.”
The controversy surrounding the project is how the genetic samples are obtained and used. David Winickoff, professor of bioethics at the University of California, Berkeley explained that these projects “rely on participation of individuals who feel it is their duty to contribute to science altruistically. At the same time, they increasingly involve biotech and pharmaceutical companies who aim to profit by these donations”.