09 December 2013
ByAppeared in BioNews 734
BBC Radio 4, Thursday 7 November 2013
Presented by Dr Adam Rutherford
The Personal Genome Project (PGP) was launched in the UK the last November (see BioNews 730). The project, which was set up in the USA in 2005, works on open access of genome sequence information of the 100,000 expected participants.
Inside Science, Radio 4's flagship science programme took a closer look, with Lucie Green interviewing Professor Stephan Beck, the director of PGP UK. Early on, the talk turned to risk. When asked about the potential pitfalls for volunteers, Professor Beck emphasised that many people already dealt with these when using social networking sites, although they would be accentuated by open publication of genome data.
The most outrageous hypothetical risks are detailed in the consent form that volunteers sign before taking part. Among those worst case scenarios, Professor Beck said, are being cloned against your will or having your synthesised DNA planted at a crime scene.
Risks less likely to furnish the plot of a sci-fi novel were also touched on. Participants might be discriminated against when applying for insurance or even in employment. Then there's the risk of surreptitious paternity tests to consider. If these are too troubling for you, Professor Beck said, don't volunteer. Indeed, to be involved, volunteers need to pass a 19-page test confirming they know exactly what they're getting into.
Green also interviewed Dr Jane Kaye, director of the Centre for Law, Health and Emerging Technologies at the University of Oxford, who is also involved in the project. Dr Kaye said that the PGP would appeal mainly to information altruists, who also have a strong belief in open publication in science.
When asked about possible malicious use of participants' personal information, Dr Kaye said that they have a reporting system whereby volunteers can say if anything untoward has happened to them because of their involvement in the project. The same system has been running in the USA for six years without anything significant cropping up, she said.
What the UK really needs to ensure, Dr Kaye said, is a rigorous protection against genetic discrimination; we already have law which prevents people from testing DNA without consent.
For my part, I salute PGP volunteers for making a not-risk-free contribution to the advance of medicine.
At the same time, how about their relatives? Are they also giving consent for the disclosure of part of their genome sequences? There are significant privacy issues that come out of the PGP that maybe can't be resolved by giving the volunteer an exam before they sign up.