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.
Jason
TechNyou
The patenting of human genes must be stopped
Dr Leslie Cannold and Prof Luigi Palombi fuel the fire of the patenting of human genes, either natural or synthesized by Craig Venter
ABC The Drum Unleashed: 31 May 2010
New source of stem cells for heart repair
Stem cell from the amniotic membrane have rejuvenated damaged heart muscle in rats
US News 28 May 2010
Reference
Hiroko Tsuji et al,
Xenografted Human Amniotic Membrane–Derived Mesenchymal Stem Cells Are Immunologically Tolerated and Transdifferentiated Into Cardiomyocytes.
Circulation Research. 2010;106:1613
And the journal editorial – still a technical read
Will Rabbit Stem Cells Cure Your Ills?
Not likely. This is another miracle stem cell treatment doing the rounds.
The Australian Newspaper reported at the end of April on Fetal Cell Technologies International — with headquarters in Kuala Lumpur — and their free “education” seminars being in Perth and Sydney on the apparent benefits of injections of cells from rabbit fetuses.
The Australian Stem Cell Centre has posted some more detail about this mob and their partners. They have also done their homework on what real and peer-reviewed science has been done using rabbit stem cells. The short answer is none.
Monash University is in the middle of research investigating what drives people to use these dodgy-brother stem cell services, or at the very least unproven technologies. I suspect there will be some intriquing results from this. I will keep posted.
Jason
TechNyou
Will we swallow nanofood?
Food is emotional but if you mention nanofoods to most people you will get a blank look. But that may change as there be science being done in the dungeon-labs of our global food giants. And herein lies the problem. It seems the food companies (Nestle and Kraft being two named in a New Scientist article) are reluctant to let us know exactly what nanofoods they are working on down in those. This can only lead to suspicion and ultimately rejection, at least among a certain core element of the community that will then broadcast it to the world and launch scathing attacks on these companies. They must have masochistic love for damage control.
It’s not just me
I am mirroring the sentiment in the recent New Scientist editorial, one that I largely agree with. There is already a increasingly vocal push by groups such as Friends of the Earth to improve vigilance and food safety guideline or legislation when it comes to nanofoods. A lot of their reports have attempted to find what companies (food and cosmetics mostly) are using nanotechnology and what nano ingredients end up in the product. Not many companies have been forthcoming with the info and one could argue that FOE is justified in their calls asking for greater transparency on this.
A dare
So my message to the food companies is to engage with your community, talk to them about the science, its limitations and risks, and where you think the benefits are – hell open up your labs for guided tours. Nobody expects you to give away trade secrets, but you can reveal an awful lot without letting slip the IP.
I think you will find that people’s suspicions will disappear, except for the conspiracy theorists’. If you seem to be getting the message that what you are doing is going too far, is putting our health at risk, discuss it with them.
There is always a but…
There are two problems with my suggestion. The first is that it is possible the companies are already doing exactly what I suggest. If so, it would be interesting to hear from them and find out the feedback they get from people. The second is the evidence that my suggestion will work is largely anecdotal or theoretical, but there is plenty of evidence that locking the doors is a recipe for trouble.
Uncertainty is a powerful emotion and even the slightest uncertainty or hint of risk can cause panic or rejection – GM foods, MMR vaccine, climate change….
Extra stuff
Previous TechNyou posts on risk, uncertainty and public engagement – with links to references
Jason
TechNyou
The taste of tiny: Putting nanofoods on the menu
So what is a nanofood? It isn’t just about nanoparticles.
New Scientist: 27 May 2010
Bt maize (mostly) harmless to earthworms
Four year study: Genetically modified Bt maize does not harm earthworms even after several years of cultivation.
GMO Safety: 18 May 2010
Reference
Zeilinger, A, et al Soil Biology and Chemistry April, pp1-9 (2010)
New stem cell illuminates human brain evolution, therapies
US scientists have discovered a new stem cell in the developing human brain involved in our higher cognitive function.
Uni California SF media release 24 May 2010
Reference
Silver nanoparticles reduce cell damage caused by ethanol
No it isn’t a hangover cure, but silver nanoparticles of just a few atoms can protect against the cell damage caused by ethanol.
University of Barcelona: Media release 26 May 2010
Reference
Journal of American Chemical Society 2010, 132 (20), pp 6947–6954
Burning bush gene produces healthier oil for food and fuel
US researchers have identified a gene from the ornamental plant dubbed the “burning bush” that when inserted into mustard seeds produces a novel, high-quality oil suitable for food and biofuel.
Reference
Published in Proceedings National Acadamy of Science (PNAS) 18 May 2010