Hope, stem cells tourism and the art of dialogue
American J of Bioethics devotes its May issue to the topic of stem cell tourism with insight into industry drivers and the power if hope, but if hope trumps everything why bother with informed dialogue?
American Journal of Bioethics, devotes its entire May2010, Vol. 10 Issue 5 to the topic of stem cell tourism. You will need a subscription for access to most of it.
I know I have banged on about this is the recent past, but I find it an intriguing topic at many levels: the mental reasoning of the potential patient, the legislative response, the people behind the “miracle treatments” and the consequence for my trade, science communication.
Power of hope
I am frequently wondering if anything I say or do in the communication of this topic is going to influence a patient who is desperate for any sort of treatment. I suspect not as I have talked to a few people now, one an acquaintance of the family, who were seeking treatment and, in the statistically valid number of cases (umm…just 2) that I managed to continue the dialogue long enough for, they were going to take the treatment anyway.
As one of the papers in the journal suggests: hope and patient autonomy trumps any reasoned ethics (and I would add science) or legislation.
I am sure the people I spoke had made their mind up before their chat with me. The family acquaintance (an intelligent dude, by any measure) was given an extensive insight into the world of stem cell tourism and the charlatan operators. In his case the treatment being promulgated was using sheep fetal stem cells. The use of these in Australia is illegal and the Australian Stem Cell Centre has done a literature search for to see if any peer-reviewed research on this came up. And the result – zip, nada, nought. Armed with this knowledge he was still going to pursue the treatment, at least he was when I last spoke to him. Hope wins again. Why is it such a powerful force regardless of how futile?
Informed hope
The bigger question is how do we tackle this from a communication perspective? It is an emotive possibly psychological issue rather than a communication issue, so I wonder if the answer is outside our professional expertise and all we should do is present the facts/realities about stem cell research and accept the fact that people will likely choose to ignore it. Or is that a cop out? To me it is akin to defeat and letting the dodgy sods running these stem cell clinics get away with murder, though not literally – not yet anyway.
Maybe the best we can strive for, as suggested in another paper in the American J Bioethics is informed hope.