Organ Donation: Now there is an App for that!

A mere week after I blogged about the potential for social media to encourage people to register their views about organ donation facebook and the UK/USA blood and organ donation services team up to do exactly this! What they have produced is not exactly an ‘app’ but a Facebook page (UK version, USA version) for each service facilitating individuals in signing up to their countries’ donation register. In the new timeline profiles you can also make registering to donate a ‘life event’ under the health and well being tab (Facebook help page). 

(Incidentally other health and wellbeing life events formally recognized by Facebook include: overcoming, but not contracting, an illness; quitting a presumably negative habit (smoking, drugs, alcohol) although not taking up a positive one (running, seeing a psychoanalyst); losing, but not gaining, weight; a change eating habits - presumably from omnivorous to vegetarian or vegan; getting glasses or contacts; and breaking bones. A somewhat strange list). 

This link up between Facebook and UK/ US organ donation registries is, I think, all well and good. But there are some obvious, if minor, flaws. One can record the ‘life event’ of registering as an organ donor on facebook without actually signing up to anything. Some people might do this as they may feel under some degree of peer pressure to (appear to) be a registered organ donor whilst having no intention to desire to formally register. Research Ethics Committees are attuned to the potentially coercive aspects of the context in which people are asked to participate in research (Art Caplan suggests this context will not coerce but may sway an individuals decision to donate here). Facebook may well be recording any number of insincere wishes to donate. Of course facebook is not a replacement for an organ donor registry but one can imagine a situation where a family is asked about the wishes of an individual who does not appear on the registry. They may recall, or even look up, if they have expressed a view on facebook. This concern is, I think, another good reason for the organ donation register to not simply record people's positive desire to donate but to record any and all positions individuals might have on donating their organs including ‘no’, ‘don’t know’, and ‘I want my family to decide in the event of my death’. Facebook might then alter their approach to indicate that an individual has registered their views but not necessarily indicate the content of those views. Of course individuals would, if they wished, be able to comment further and express the content of their views. But I think moving towards this approach would be preferable. 

My concerns about the possibility for individual’s view to be registered by others remains. It is often easy to mess with someone’s facebook profile if they leave their computer unattended and, as I previously noted and David Hunter discussed on the JME Blog, you only need someone’s name, address and DoB to register them in the UK. The NHS Blood and Transplant Service told me they send out a letter to confirm registration – I haven’t yet received one almost two weeks after registering. Again, this letter requires no further action on the part of the individual to confirm that it was they who registered. In regards facebook it would be better to have a more fully integrated app that would ask for confirmation sometime after initial registration and sought reaffirmation of an individuals views at regular intervals of a year or two. 

These quibbles are not so much about the link up between UK and US transplantation services and facebook but about the structure of the UK organ donor registry per se. Now that it appears moving to an opt-out register is off the political agenda perhaps it is time for a rethink and, as suggested by the Nuffield Council of Bioethics, record the views of all individuals rather than just those who want to donate. In reorganizing the registry along these lines a larger public and political conversation can be had about other aspects of organ donation including, naming two contemporary topics, Donation After Cardiac Death (DCD), and Elective Ventilation (EV). 

Finally, since the movers and shakers of this world are obviously reading my blog, may I ask: 'World Peace, why isn’t there an app for that?'