The search for UK volunteers willing to ditch privacy and donate their genome and health data to science has begun with the launch of the Personal Genome Project UK. The organisers hope to find 100,000 donors.

The search for UK volunteers willing to ditch privacy and donate their genome and health data to science has begun with the launch of the Personal Genome Project UK. The organisers hope to find 100,000 donors.

PGP-UK aims to offer every participant analysis of their genome, as part of a novel open consent protocol, enabling genomic data to be linked to medical and health records to create an information-rich resource that is made available under open access, allowing free and unrestricted access.

“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, the director of the project.

Surrendering the right to genetic privacy is a novel development, especially at a time when countries all around the world are worried about keeping their data private from Google and security agencies. Entry to the project requires a thorough understanding of the risk of someone linking an on-line genome with a real person. “This is not for everyone,” Jane Kaye, director of the Centre for Law, Health and Emerging Technologies at Oxford University, told The Guardian. “We are talking about information altruists here.”

The US was the first country to roll out an open-source genome project. The genetic records of about 700 people have been published so far, but thousands have applied.

The program has its critics. “To put 100,000 genomes on the web so anyone can download them and use them is more than creepy,” says Ross Anderson, a computer security expert at Cambridge University. “I wouldn’t dream of doing it. You don’t know where that’s going to get to, we don’t know enough about this yet.

Helen Wallace, of GeneWatch UK, also expressed reservations. “GeneWatch UK’s view is that people should think twice before agreeing to share their genome openly. Remember your DNA contains a unique genetic code which can be used to track you and identify your relatives. Stored online it will be accessible to police, security and border agencies based in any country,” she said.

“This project is sponsored by companies who are lobbying to expand the market for whole genome sequencing and open this data up to commercial exploitation. Genes are poor predictors of most diseases in most people but companies from Google to the private healthcare industry want to data-mine this information for personalised marketing, massively expanding the market for drugs sold to healthy people.”

Michael Cook
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Michael Cook

Michael Cook edits BioEdge, a bioethics newsletter, and MercatorNet, an on-line magazine whose focus is human dignity. He writes from Sydney, Australia.

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