Volunteers sought for 'open access' genome project

Volunteers sought for 'open access' genome project

Up to 100,000 British volunteers are being asked to publish their genetic code online in the name of scientific research, despite the risk of discovering they have the biological triggers for incurable diseases like Huntington’s or Alzheimer’s.

The Personal Genome Project UK (PGP-UK) is aimed at building a trove of genetic and health information, which can be accessed by researchers, drug companies, or anyone with an internet connection.

Scientists hope that sequencing the full genomes of volunteers and making them free to access can help speed up the drive for new treatments in areas such as cancer, diabetes and dementia. Paired with information about their health and other traits, the data could help scientists learn how genetic and environmental factors drive disease, and why medicines affect people differently.

But those taking part also risk the terrifying prospect of learning that they are at high risk of conditions such as Huntington's disease, for which there is a well-known genetic cause but no cure.

Researchers insist their data will not be up to a medical standard – meaning any concerning results would have to be retested by a doctor before being confirmed.

But anyone volunteering will be warned about a host of "scary" scenarios that could occur, including the risk of discovering genes linked to diseases such as Huntington's or Alzheimer's.

Although the data will be anonymised, they accept that it could be possible for volunteers' identities to be discovered, and once published online their information would be impossible to permanently erase from the internet.

Volunteers are also encouraged to consider scenarios which could be possible in the future, such as the risk of having their DNA planted at a crime scene, or even of being cloned without their permission. The ethical and psychological risks are such that all participants must complete a test proving that they understand the potential ramifications before signing the 19-page consent form.

But researchers revealed that they have already been approached by 450 willing volunteers, despite the fact the project did not launch in Britain until today.

It follows a US version, which launched in 2005, and a Canadian branch which began last year.

Prof Stephan Beck, one of the UK project leaders from University College London, said: "Donating your genome and health data to science is a great way to enable advances in the understanding of human genetics, biology and health. "This project is important for a number of reasons. It will establish the practice of open consent in the UK and enable medical advancement through meeting science's need for richer data."

Anyone taking part will donate saliva and skin or blood samples, and in return receive a report detailing any significant findings linked to disease, whether they are treatable or not.

The report will be updated each year if findings change in light of new scientific discoveries.

A total of 25,000 human genomes have been sequenced around the world in various projects, but just a fraction are available to the public and only four per cent of volunteers concerned have access to their own data.

Sharmila Nebhrajani, chief executive of the Association of Medical Research Charities, said the project was an "exciting initiative" but also a "real ethical challenge". "Those who do decide to make their genomic data available on an open source basis, such as the PGP, should understand the implications of that decision," she said. "That the data revealed is a permanent marker of them as individuals and indeed not only of them but also of their families; that the genomic data may show the presence of late onset diseases that have yet to manifest themselves."

By Nick Collins

The Telegraph, 7th November 2013

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