The public, health research and democracy @SDenegri
I support the new organ opt-out law but……..
A beautiful, sunny, Saturday morning walk through Glasgow streets with my wife some years ago brought us to the wonderful Kelvingrove Musueum and Art Gallery and something of a surprise.
The ‘Loveseat’ – as shown above – is a Scottish memorial for organ donors. It was established in 2000 and, until April 2014, a silver leaf was attached for every deceased organ donor in Scotland. But with very little space remaining, a new national memorial was created in Edinburgh.
It is a moving tribute which perferctly sums up the relationships and emotions that lie behind organ donation and I thoroughly recommend a visit – and to Kelivingrove as it happens.
I support the introduction of the new law which is currently passing through parliament as a Private Members Bill. But we should see it as a foundation for a wide range of other measures needed if we are to boost the number of registered organ donors and reduce the number of deaths due to lack of donors.
Not as a magic bullet in itself.
As many observers have commented, Wales has not seen the hoped-for rise in organ donors since it changed its law. Spain has a remarkable success story to tell about organ donation. But legislation has been only one part of its tale. This is an excellent article about Spanish approach. Outstanding clinical management and practice, support for families and public awareness seem key features of their world-leading achievements.
Philosophically I have some sympathy with the argument that legislation in this areas is tantamount to the Government declaring ownership over something that only we have a right to decide privately and without intervention from anyone least of all the state.
In fact, when I heard some of the arguments play out over the weekend I cringed with the memory of civil servants who used to tell patients ‘you don’t own your data’ at the the melodramatic height of the debate about patient data. Talk about own goals. Of course they do. All Government’s operate under licence and that licence is public opinion.
So we must be careful. With the national data opt-out and now the organ donation opt-out it is important we do not to step too far towards completely rearranging the social relationships that underpin the provision of health and social care with no debate at all.
There has been much talk about the need for a new social contract in health care and reserach. If so, let’s have a national discussion about what this means. Let’s walk into this new era, together, and with our eyes open.
The memorial at Kelvingrove recognises the extraordinary humanity that is organ donation and brings together those involved – donors, organ recipients, families and loved ones – with a symbol of mutual respect and kindness.
For this reason perhaps we might also think about re-naming the legislation as the ‘Keira and Max’ law to recognise Keira Ball, the nine-year old girl who gave Max his new heart.