January 21, 2009
Correspondence: Stem cell transplants: the power of peer-to-peer
By: Graham Creasy & Christopher Thomas Scott

To the Editor: Your September editorial discussed how patients use information technology and the Internet to form online communities. Increasingly, these portals are used to exchange information and discuss treatment options in ways that are potentially powerful and disruptive to conventional models of healthcare, education and research.
     A particularly sensitive application of this technology has arisen as patients pursue potential applications of stem cells to chronic, disabling or terminal conditions. Although there is widespread interest in the curative power of pluripotent cells, there are few clinical applications or approved clinical trials using stem cells in industrialized countries for scientific, medical, ethical, legal and political reasons. Individuals with incurable conditions, finding information on the Internet about interventions in other countries, are attracted by promises of benefit and even cure. Acting out of determination and sometimes desperation, they travel in increasing numbers for stem cell transplants, usually at considerable personal cost. The stakes are high; the prospects of benefit must be weighed against the medical risks and financial outlay, often with only anecdotal information to guide the decisions. This provokes important questions about how these experiments in free will might be managed and what might be learned from them...Read Entire Article