The BBC is this morning running a story on its online health pages about the launch of the UK Personal Genome Project – a UK subsidiary of a US initiative – and its ‘hunt’ for 100,000 volunteers to share their DNA to help fight disease.
Like others, I am not sure I feel totally comfortable about the narrative coming out of the project. The call for caution is well-advised in my view. Here’s the Personal Genome Project’s #PGPUK website. A brief look does not seem to provide one with many answers as to whose backing this and, more importantly, if and how patients and the public are involved in its design and running.
The same seems to be the case for the US organisations, more details of which can be found here. On the other hand, I admire the candour of Jane Kaye and her colleagues with which they are addressing some of the issues. You might find this piece that aired on BBC Radio 4’s ‘Inside Science’ Programme of interest.
Benefits it may well lead to. And I have nothing against the concept of ‘open consent.’ Far from it. I also accept that – as I say – the organisations is very explicit about the risks for people. Indeed, the BBC piece talks about people being tested to understand they are clear about what they are getting into. But, as is often the case even with something like a clinical trial, people can find it difficult to understand the risks and implications without good support.
Seems to me that we should actually be equipping the public to test these organisations as consumers (the point I was making in yesterday’s blog) rather than the other way round.
Just to confuse matters you may recall that the UK Government has recently established its own organisation, Genomics England, which aims to sequence the DNA of 100,000 patients focusing on cancer and rare diseases. They recently held a town hall event with patients and the public – which I advertised here – as part of their engagement exercise and you can find the video of this here.
Key points of difference are, of course, the focus by Genomics England on patients, applicability in a clinical setting, and their approach to consent and confidentiality.
Maybe other commentators such as AMRC are right in saying this pushes the ethical boundaries and is interesting in its own right because of that. As I amend this piece later in the day I think perhaps I am less bothered by #PGPUK itself than what it represents in terms of the opening of a new market and commoditisation of DNA.
Anyway, I know which horse I am backing for now.