Thursday, 21 May 2009

Wearing another hat

A day out of the office at a meeting of the Human Tissue Authority: I am a lay member of the Authority, joining just over a year ago. For those who don’t know – a bit of background: the HTA was set up as an independent watchdog to protect public confidence by licensing and inspecting organisations that store and use tissue and cells for purposes like research, patient treatment, autopsies, teaching, and public exhibitions. It also gives approval for organ and bone marrow donations from living people. The HTA was established under the Human Tissue Act 2004 (HT Act), which itself was in response to revelations in the 1990s that human organs and tissues were being retained in some instances without permission or knowledge of their families.

The result is that we have a very well regulated and monitored system where all premises doing any of the above activities – apart from living donation approvals – have to be licensed. I knew about the HTA and its work through Breast Cancer Campaign’s own experience in supporting research which uses human tissue but had no idea that its work also involved places like museums. (On the subject of museums – if you are not squeamish and especially if you have teenage children – the Hunterian Museum at the Royal College of Surgeons is packed full of creepy things like skeletons and things in bottles. Actually fascinating and they do special events for children in school holidays).

I am on the Authority as a lay member and not representing any particular interest but contributing to the strategy, planning and monitoring of the Authority’s work. I hope that I can bring some of my own experience in managing an organisation of a similar size and with the problems which beset all employers of small and medium sized organisations – whether they be corporate, government or charity.

I am working with some very interesting and talented people – a very diverse group from a biological anthropologist to a coroner and nurse. No lack of challenge and debate around the table but we all have one thing in common – the interests of the people we serve. I have been involved in various other activities, including sitting on an organ donor panel - a living person who has never met the possible recipient may be considered to become an organ donor. This is called 'altruistic non-directed donation'. This has to come to a panel of the HTA to ensure that the donor is absolutely aware of the risks, is competent to make the decision and has not been pressured in any way. I have been involved in a few of these and I think it is very humbling that people are prepared to take the risk of donating (usually a kidney) to someone they will never know purely as an altruistic gesture. If you want to learn more about this or perhaps even donate your body to medical science -

One area which particularly concerns Campaign is the question of informed consent. Watch this space for information on the Breast Cancer Campaign tissue bank details of which will be announced at the end of the summer. We know that over 90 per cent of women when asked before surgery are very pleased to have their cancerous tissue used for medical research and freely give consent. The confidence that this shows is one of the consequences of the work of the HTA giving confidence that this is being done properly.

PS. The next time you read a disparaging remark about quangos and how much they cost – many of them are like the HTA which don’t cost very much but have a huge impact on people’s lives now and in the future. All its financial and other information is on their website – so they are transparent as well.

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