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Privacy Questions

As the UK is beginning to ramp up its 100,000 Genomes Project efforts, Edward Hockings and Lewis Coyne raise concerns about participant privacy in the Guardian.

The project aims to sequence the genomes of up to 100,000 people, particularly people with cancer and other life-threatening diseases, and develop a database matching whole-genome sequences with clinical data.

Genomics England, which is running the project, has said that the database will be anonymized, but Hockings and Coyne report using a Freedom of Information request submitted to the Department of Health to learn that the data will actually be pseudonymized rather than anonymized. This, they say, means that data such as age and geographic area will be made available to academics, researchers, and industry. With this added data, they argue that it may be possible to identify participants.

Hockings and Coyne also question whether this difference was made clear to participants during the informed consent process, and the health department tells them that "it is impossible to inform patients at the outset of the potential ways in which their genome might be used" as the project tries to stay at the leading edge of genomics research.

"These revelations raise the issue of trust," Hockings and Coyne argue. Especially, they add, as the project is expanded, a national database developed, and personalized medicine woven into mainstream healthcare.

"It is thus imperative that there is widespread public debate about the acceptable uses of whole-sequenced genomes, and that all developments in this area should be subject to rigorous oversight," they say.