Volunteers prepared to share their DNA with the rest of the world are being sought by scientists in the UK, who want to build up a database which can be analysed in a bid to provide clues to the treatment of all manner of diseases.
Participants in the Personal Genome Project will not have anonymity – a factor which throws up a number of ethical considerations.
A statement from the Human Genome Project said: “We feel the most ethical and practical solution to this dilemma is to turn the privacy problem on its head and collaborate with individuals who are willing to share their data publicly with the understanding that re-identification is possible.”
This approach goes to the heart of the sort of debate pharma is currently having over the safety of patient data – and Dr Peter Mills of the Nuffield Council on Bioethics told the BBC: “The difference with genetic data is you’re not just committing yourself to something you might not fully envisage, but you’re also implicating biological relatives.”
However, the project team insist that sharing data is critical for enabling discovery.
“Assembling under one roof a research team with the requisite expertise to generate, aggregate and interpret this dream dataset is unrealistic,” the statement continued.
“Major contributions might come from unconventional actors residing in far flung corners of the globe. Einstein started off as a patent clerk after all. Citizen scientists, hobbyists, amateurs and the participants themselves will undoubtedly make significant contributions,” it added.
Professor George Church, head of the project’s US arm, believes looking at 100,000 genomes could create significant advances in the approach to conditions such as diabetes.
“We’re finding more and more of these common diseases are a collection of rare diseases,” he told the BBC. “Cancer used to be a disease, then it broke up into lots of different diseases by tissue, then lots of sub-categories based on the genes that are impacted, so now it’s thousands of diseases.”
In a separate development, a new technique for engineering the human genome – and potentially correcting genetic defects in human cells – has been hailed as an exciting development by scientists.
The Crispr system, which is derived from bacteria, could make these ‘edits’ to people’s genetic make-up without creating new problems because of its accuracy, its advocates believe.
This means Crispr’s potential applications range from helping find new treatments for inherited genetic conditions as well as for diseases such as cancer and HIV.
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