UK public engagement on transplantation
Here is a fresh video of a fascinating discussion that took place last night in London entitled Heart to Heart. There is some talk of Christiaan Barnard, the doctor to perform the world’s first successful human heart transplant, and placing the development–or hindrance–of transplantation in socio-historical context.
While the main portion of the first video is mostly about the history and evolution of heart transplantation in the UK and its relation to global developments in cardiology and technological innovation, there are some interesting issues related to donors and public engagement, especially in the last 10 minutes, and in the second video which will be of more interest to donor recruitment/ethics followers.
Questions about an opt out system, coping with a shortage of donors, donor quality, and public opinion are broached. One of the discussants, Francis Wells sums it up well, though he’s speaking to the particular question of donors on life support as patients electively ventilated to preserve organs for transplant. But it speaks more broadly to the mission of public engagement for the medical profession with respect to donation:
One of the wonderful things about where we live, is we live in a democracy. And you actually probably will decide in fact in the long term, not the doctor. All the doctor can do is gather the data, and have the ideas, can evolve new thoughts and ways of approaching the problem. It is then as you’ve heard in the modern world behooving upon us in a transparent way, to produce overpowering information which can then be put to you the public to decide that you wish your lives to be influenced in this way. So I’ll put that to you fairly and squarely. Whatever you might think about the medical profession, we can’t do much without society approving. And that’s one of the big changes that we brought out early on.
The second thing is that the public, you the public, have to be okay with the fact…if you are going to willingly give yourself as a donor, you have got to be confident that the way that you’re going to be handled, and your families have got to be confident in the way that you’re going to be handled, that you are safe, that nothing is going to be done to you to shorten your life, in any shape or form to drive forwards a technology which at that level can be seen as being marginal. And I think if any of us disregarded those feelings amongst the public, we would be doing transplantation as a whole a very great disservice, because transplantation is about you, and for you, and thus I include us the public. It’s a therapy, amongst many therapies that has to be handled properly and well. so I do think the public debate is going to be massively important here. But for us from the point of view of the doctors we’ve got to produce the evidence to show why we need it, what the impact is, is it safe, and can the measurements that we can make on the potential donors that group be such that we know we’re not doing anything to shorten the life of someone who might survive reasonably. Beyond that, I think its in the hands of the future.
This comes off the heels of a publicly available recent report released in the UK by the British Medical Association about transplantation and the next steps to formulating transplant policies. And there is also a recent episode of radio call in program You and Yours on BBC radio about organ donation and ways to increase the number of donors.
Indeed, the fora to discuss transplantation, as well as to communicate transplantation in terms of its history, how it has changed, the ethical issues at hand, the science behind it, and where it might be going, is a key approach to what many medical professionals and bioethicists believe to be the crucial element of public engagement. But in the midst of this great wellspring of public engagement with transplantation, the very notion of what constitutes the public or society at large, and what sort of public is responsible for making these decisions that Wells alludes to above is another very important question. As Marilyn Strathern says :
In research policy rhetoric, the switch away from “public understanding” of science to “public engagement” switches from society as the passive consumer to society as an active consumer- participant in knowledge production. The science that was once robust through its own validation procedures…must now acquire an (other) efficacy from beyond itself…In effect, science incorporates society into its aims and objectives in order to anticipate or pre-empt society’s verdict. Yet, I wonder, will it be audit itself that renders the future of science fragile? Uncertainties over the kind of social reception given to new knowledge may well pale beside the institutional requirement to demonstrate robustness. That will require, among other things, keeping stable what counts as “society.” And society will need to be kept visible (in Ong and Collier 2005, 467).
The notion that fora or radio call in programs are an effective way to engage the public and foster societal debate as forms of public opinion as moral compass or ethical sanction to move transplantation policy forward might overshadow other means of public engagement, or exclude certain sectors of the population who might not be inclined to call into a radio program or attend a formalized discussion, or listen to programs that normally cover such issues. In addition to (re) defining what incarnation(s) of the public are worth reaching out to, then the best ways to do so might need to be revised. For the time being, it is great to see such intelligent and active work to communicate issues of transplantation to a wider audience.
Stathern, M. 2005 ‘Robust Knowledge and Fragile Futures.’ In Global Assemblages, eds. A. Ong and S. Collier, 464-481. Oxford: Blackwell.