So this feels to me as though common sense has been snatched from the jaws of defeat at the feet of academia.
The initial announcement of a ‘genome mapping initiative’ by the Prime Minister in December was followed by not very convincing noises about the shape of things to come. Indeed, I fired off a couple of emails about public involvement and engagement and was non too impressed by the responses.
Today the Secretary of State, Jeremy Hunt, used the 65th birthday of the NHS to announce the follow-up move to his boss’ announcement. This comes in the form of an independent body called ‘Genomics England.’ From a public and patient standpoint these pages on how ‘Genomics England’ will work seem to be the most important ones to review.
There are some clear statements here about consent and other issues to do with practice. The overall message seems to be that ‘engagement’ is one of the top priorities of the new organisation in these first few months in particular. Also that the door is open to ideas and proposals for a governance approach and mechanisms of involvement which reflect patient and public interests. As an aside, the focus on rare disease will please many.
Fully accept that not everyone will be happy or convinced. And I am ever the optimist. But I am afraid that’s the only way I know how to approach these things. What is it that I heard Baroness Pitkeathley once say? Campaigners are ‘positive, persistent and patient.’