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Call for volunteers for open-access genome project

11 November 2013

By Simon Hazelwood-Smith

Appeared in BioNews 730

The UK branch of the Personal Genome Project (PGP) has launched, with the aim of sequencing the genomes of 100,000 British volunteers. The project hopes to provide an open-access database of 100,000 genomes accompanied by medical histories to accelerate research into diseases with a genetic component.

'Donating your genome and health data to science is a great way to enable advances in the understanding of human genetics, biology, and health', said Professor Stephan Beck from University College London (UCL), who is directing the PGP-UK.

But the privately-funded project has met with a mixed response from the scientific community and media. While it is widely expected that databases of this size will encourage new insights into genetic disease, there are also concerns of privacy risks for volunteers.

Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities, told The Telegraph that the PGP was an 'exciting initiative' yet presented a 'real ethical challenge'.

Any volunteers should understand, she said, 'that data revealed is a permanent marker of them as individuals and [...] also of their families'.

'The genomic data may show the presence of late onset diseases that have yet to manifest themselves', she added

The PGP-UK website displays a list of potential risks to participants which includes discovering a genetic predisposition to diseases with no known cure, having personal genetic data used to determine insurance policies or used in a paternity test. Volunteers have to complete a test to show they understand the potential implications before signing the 19-page consent form.

Dr Catherine Elliott, director of clinical research interests at the Medical Research Council said: 'In this day and age, cast-iron guarantees of absolute anonymity just don't exist. What can be guaranteed is that patients will increasingly benefit from data sharing between researchers'.

As PGP-UK was launched, 450 people had expressed an interest in volunteering and 50 genomes were due to be sequenced in the first year. Cian Murphy, a PhD student at UCL who has pre-registered, said he would 'happily provide my own DNA and medical history. Anonymised or not, I believe the risk in doing so to be minimal and far outweighed by the desired paradigm shift in making this type of data freely available to everyone'.

PGP-UK has significant differences from the publicly-funded NHS's Genomics England project, which also aims to sequence 100,000 genomes. Data collected for Genomics England will be held behind a firewall and will focus on NHS patients with diagnosed diseases.

Yet Professor Beck hopes that there will be opportunities for collaboration. Talking to the Nature News Blog, he said: 'We are very interested to work together with Genomics England to develop a procedure so those individuals willing to donate their genome can, so it becomes a PGP genome, and all associated data becomes open to everyone'.

PGP-UK is the third franchise of George Church's original US-based PGP, with further projects planned in South Korea, Germany and South America.

SOURCES & REFERENCES
University College London (press release) | 07 November 2013
 
The Guardian | 07 November 2013
 
BBC News | 07 November 2013
 
ScienceInsider | 06 November 2013
 
The Telegraph | 07 November 2013
 

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