“Would my boob have been of any use?” asked one of the speakers at an event organised by the Royal College of Pathologists and the Confederation of Cancer Biobanks this week. She had undergone mastectomy following extensive treatment for breast cancer but had not been aware of the option to donate her breast tissue.
15 years later, she wishes someone had thought to ask.
The aim of this event was to give an introduction to the use of human tissue in research, and to discuss ways to increase understanding of the need for more tissue donors. Advertised as ‘an interactive event for the public’, it involved display stands where researchers and pathologists demonstrated how they use (…’pickle’ and embed in wax for storage, slice, dye and analyse samples of) bodily material.
It also incorporated several rounds of voting (after an initial test poll on who should win this year’s ‘Strictly’ between the Rugby Bloke, the ex-Bond Girl, the Soap Star, the Wag and the Dancing Chef) to survey the audience on how they felt – and thought the general public felt – about donating blood and ‘leftover’ samples taken during treatment, whole organs and gametes during life or after death for research.
As it turned out, this crowd was overwhelmingly positive to all kinds of donation (albeit a bit hesitant when it came to brain tissue and gametes), though it was acknowledged that this was probably particular to a group who had found time to talk about human tissue on a Monday evening. The final polling question established that most people in the room thought it highly unlikely that doctors and nurses do indeed make patients aware of the option to donate.
This brought back to me the findings of the Council’s report on donation, which suggested that, if asked, most people are more than willing to permit their tissue to be used for research. The report concluded that difficulties in accessing tissue for this purpose related less to how people feel about donating than to the need for much better systems to ensure that consent is sought and documented.
One approach suggested by the panel in the subsequent debate was to systematically ask patients whose sample of whatever kind had been taken as part of their care, put bluntly: “we’re going to chuck this stuff in the bin, would you rather we put it to good use instead?”. Another was to presume people would consent, and simply go ahead and use it without needing to ask. It would certainly have been interesting to see a vote on this.
The highlight of the evening was a hypothetical sales pitch. The product put forward was a swipe card for all NHS registered individuals which would be used to record whether they were willing to donate, and if so what tissue and for what purpose. This card would link to an online account which could be accessed and updated when swiping at terminals in GP surgeries, public libraries and shopping centres. Prompts could be sent via email or sms when new research projects were initiated so that people could consider donating for these.
In the discussion that followed, it was quickly concluded that the card itself would probably be an impractical arrangement, but that the thought behind it, an engaging means of making people aware that they can donate tissue for research when it’s taken for diagnosis or otherwise, had full support in the room. The idea that there should be more interaction with donors, for example enabling them to submit additional ‘enriching’ data after the donation itself had taken place, such as by submitting information from their health records, was also discussed.
Then came another speaker – engaged specifically to shoot the idea down. He began his task flippantly, arguing that pockets bulging with a wallet already filled with an immense number of plastic cards were ruining his looks, but he also presented some more serious challenges to the proposed scheme. Such a card could serve as a way of recording and making available potentially sensitive information about us and our bodies. Should we not be worried about the amount of data that is held in various places about us already, he asked. Could this information be accessed and used maliciously?
This triggered a debate which made it clear that the handling of information about patients and donors was a key concern also in the audience. Many questions were raised which we are also raising in our current consultation on the linking and use of biological and health data: Who owns data about individuals? Who should have control over how it’s used? If people contribute information, should they not themselves be able to benefit, even profit, from having shared it?
A strong final message from researchers was the importance of building a culture of trust to address concerns in the general population about what might happen to their ‘material’, be it physical tissue or personal data. The media was given some responsibility for this – the nature of coverage of ‘scandals’ such as Alder Hey had not helped – but mostly the feeling was that communication must be improved across the board. Pharmaceutical companies must become more transparent, hospitals should clearly state that they do research, and doctors and nurses should start talking to patients and their families in a sensitive and appropriate way about donation.
Oh, as for the ‘Strictly’ poll, for those interested, the winner, with about 60% of votes, was the final option: “’Strictly’…what’s that?”.