By Ben Hirschler
LONDON (Reuters) – The hunt is on for 100,000 British volunteers to post their genetic information online in the name of science as a North American open-access DNA project arrives in Europe.
The launch of the Personal Genome Project UK on Thursday offers the public a chance to learn more about their own genetic profiles and contribute to advances in medical science – but it also poses ethical challenges.
Unlike other genome-sequencing initiatives, where data is placed behind a firewall, information contributed to the new project will be available to all.
George Church of Harvard Medical School, who first launched a U.S. version of the scheme in 2005, believes sharing such data is critical to scientific progress but has been hampered by traditional research practices.
“Precision medicine is about big datasets about individuals and that is what the Personal Genome Project offers,” he told reporters in London, comparing the approach to a genetic version of Wikipedia.
A genome is a read-out of a person’s entire genetic information. As a result, sharing this data could create dilemmas for those involved.
It could, for example, reveal the presence of undetected diseases or an increased risk of developing a condition such as Alzheimer’s. There is also the possibility that new technology might allow the malicious use of DNA data.
Those volunteering will be warned about the implications for their own privacy and that of their families, according to Stephan Beck, professor of medical genomics at the UCL Cancer Institute and director of the British project.
To enroll, participants will have to be aged at least 18 and pass an online exam to check they understand the risks and benefits. After getting an analysis of their genome, they will also have a four-week “cooling off” period before deciding whether they want their data to go online.
Beck told reporters he expected within the first year to sequence 50 people’s genomes – the 3 billion chemical pairings that make up human DNA.
Understanding the role of this genetic code and the genes it forms is increasingly important in unraveling complex diseases like cancer. It may also reveal why some people have particular traits, such as musical perfect pitch, Beck said.
Since the first human-genome map was unveiled in 2000, some 25,000 people around the world have had their genomes sequenced – but just a fraction of this genetic information is publicly available for all scientists to scrutinize.
In the United States, Church has signed up some 3,000 volunteers for his open-access project, with a few hundred more in Canada, although only around 200 full genomes have yet been sequenced.
He predicted genome sequencing will speed up as the cost continues to fall dramatically – it has come down from $ 1 billion 20 years ago to a few thousand dollars today.
(Editing by Barry Moody)
- Personal Genome Project
- Harvard Medical School