China plans 'largest gene bank'

http://news.bbc.co.uk/go/rss/-/1/hi/sci/tech/7046586.stm

Version 0 of 1.

By Poppy Toland Beijing

Citizens of Taizhou are keen to helpWith China's National Day holidays out of the way, students in Taizhou, Jiangsu, are returning to their voluntary duties of collecting genetic data from the city's willing citizens.

Volunteers and sample donors will contribute to what project organisers claim could become the world's largest genetic databank.

Launched in June, it already holds samples from 10,000 people, only a minute proportion of the five million it aims to accumulate over the next decade.

"This project will improve Taizhou in every respect, whilst also contributing to the development of China," declares Wang Jingsu, deputy director of Chinese Medical City (CMC), a quasi-governmental organisation headed by Taizhou's deputy mayor.

CMC hopes ambitious plans and heavy investment will transform this non-descript city of five million, 170km north of Shanghai, into the thriving hub of China's future medical industry.

Icelandic pioneers

Berkeley Biotech, the company overseeing the databank project, was conceived in the US but registered as a Chinese company in April. It has already secured RMB 15m ($2m) for the project from CMC, as well as additional US investment.

These facilities will give Chinese scientists a good position to collaborate with overseas scientists Wang Wei, Capital Medical University Last week, Shanghai's Fudan University, a partner on the project, welcomed Iceland's President Olafur Ragnar Grimsson, who discussed how Iceland could assist.

A pioneer of genetic databanking, Iceland's project deCODE has successfully collected samples from 110,000 people since 1998, over half the island's adult population.

With its historically isolated population, Iceland is an obvious place to carry out human genetics studies. In addition, the country has maintained very complete health records over a number of generations.

These factors will assist greatly the quest to work out heredity of traits and diseases. Conducting a similar project in China is more ambitious.

"I hope they know what they're doing in terms of population structure," comments Alan Bittles, director of Australia's Centre for Human Genetics, who has been involved in several human genome studies in China.

"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."

Commercial applications

Wang Wei, dean of the School of Public Health and Family Medicine at Beijing's Capital Medical University, recognises China's trend towards developing infrastructure for scientific research.

"These facilities will give Chinese scientists a good position to collaborate with overseas scientists," he comments.

Pharmaceutical companies keen to take advantage of China's rapidly expanding healthcare market might be able to use the database to tailor drugs to suit Chinese consumers.

Genetic testing provides "personalised" medicine or the ability to "predict a response to a drug, either positive or negative, depending on genetic background," explains Fanqing Chen, scientist from Lawrence Berkeley National Laboratory and adviser to the project.

He believes the databank will allow companies a "better understanding of disease biomarkers, indicators for diagnosis, treatment guidance and prognosis".

The databank is a useful resource for universities too, and negotiations are currently underway with Nanjing University's Life Science College, which has isolated biomarkers linked to colon cancer.

The databank could be used to screen large numbers of people for genetic variations to which the disease may be linked.

Bittles thinks Taizhou may be emulating the UK Biobank, which aims to collect samples from half a million people from the UK, following their progress over 25 years.

He explains that since starting sample analysis, UK Biobank has realised it has underestimated the number of samples it needs.

"If 500,000 aren't enough for a UK population of 60 million, what does five million samples mean for a Chinese population of 13 thousand million?" he asks. "Don't be deceived by the number five million; it's only 0.4% of the total population."

Nevertheless Huang Jinlin, Berkeley Biotech's CEO, boasts that, even in its infancy, Taizhou has collected more samples than similar projects in other countries, which "are still in planning stages and are doing things relatively slowly".

Ethical issues

Sarah Cunningham-Burley, chair of the Human Genetics Commission's Genetic Databases Monitoring Group, works closely with the Scotland-based genome project, Generation Scotland.

She explains the long lead-in time between the project's conception in 1999 and participant recruitment in 2006 was not spent idle. Among other things, the project was setting up an advisory board and oversight framework to ensure strict ethical standards. Equally important were ongoing public consultation sessions.

"In the UK a project like this wouldn't succeed without public support. You have to be transparent and engage the public," she says.

Public support is offered more readily in China. In Taizhou, permission has been obtained from housing committees in residential areas for student volunteers to knock on doors and enlist participation. Mr Huang speculates that local people see participation "as a public service".

This is a point of controversy in bio-bank projects, explains David Winickoff, professor of bioethics at the University of California, Berkeley.

They "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".

Taizhou's methodology has been approved by China's Board of Ethics, but Professor Winickoff is concerned that although voluntary, participation does not sound as if it is being obtained with proper informed consent, or "fully disclosing the planned uses of samples: what information will be extracted, who exactly will have access to it, for what purposes, and for how long?"

Blissfully unaware of these controversies, Taizhou citizens continue spitting into cups in the name of science.