Chinese surgeon Hongyun Huang has received lots of press coverage in recent years about his controversial work in Beijing transplanting fetal nerve cells into the spinal cords of hundreds patients with spinal cord injuries, with the promise that they’ll regain function. Now the Boston Globe reports on a paper published a few months ago in Neurorehabilitation and Neural Repair by scientists from the US and Switzerland saying that not only does Huang’s procedure not meet international safety standards for clinical trials, but that it also didn’t result in any benefit and even caused a high rate of complications (such as meningitis), at least in the seven spinal cord injury patients they assessed. The Globe article says this is the first independent, scientifically rigorous study of Huang’s patients.
Huang is not the only person in the world offering unproven and even suspect cell transplant treatments with false promises; it’s a good business for them. Huang has operated on hundreds of patients, including Americans (one writes about his visit to Huang’s clinic on his personal website), charging them up to $20,000 each. A quick search of the Internet will reveal spinal cord injury patient chat rooms where people ask each other about Huang’s procedure and how they can make the trip to Beijing.
We can blame the media for giving him so much attention (Nature, Nature Medicine, Technology Review,
The Guardian, many others and not to mention the Chinese media). We can also blame other scientists for hearing him out. He’s been invited to conferences and to give talks, including one in Boston in 2004. We can blame the hype surrounding the promise of stem cell research and regenerative medicine generated by both the media and scientists looking for funding and favorable stem cell research policies. Given all this, it’s no wonder that desperate and determined patients travel halfway around the world to undergo unproven treatments they think will cure them.
While scientists sell the promise of stem cell and cell therapy in general, shouldn’t they have equal responsibility to reach out and communicate with patients and patient groups about how far away safe and effective cell therapies really are, if they can ever be found? What can and should they do to keep people like Huang from raising false hopes and hurting more patients?
Raising false hopes should never happen. Hope is a very powerful thing and while it is good to encourage people to be hopeful, for we do not know what the future may hold, to encourage hope KNOWING that a therapy is far from proven or especially when it is a fraud, is not to be done. The trouble is in how to police such claims? In the US, we have a system of safeguards about how people can be enrolled in clinical research, what they must be told, and the informed choices from which they can choose. It doesn’t always work as it should, but I do feel that it makes a very good effort. One basic problem here, however, is that I wonder if there is ever such a thing as a truly informed consent. I worry that the patient bearing a terminal illness will see any chance, even an incredibly small one, as worth pursuing. Thus, in practice, it may not matter how unlikely an experimental therapy is to succeed, only that there is SOME chance that it will. Other countries in which an increasing number of clinical trials are being conducted (Google “medical tourism”) need to rise to the challenge of forming better standards to protect patients. Scientists and physicians everywhere should always hold themselves to the standard of being very critical about results, whether they go in the direction we hope or not. I feel that it is the only way to do science.
Blame Nature for attention to persone like Huang for what? All news about him were mostly negative or neutral.
If high ranking journals like Nature will not pay attention of stem cell therapy, fraud and situation around the world, who will? what jounal should do it? Only most trusted journal in scientific worl should, like Nature
and i’m proud of Nature and NPG because they told us true about it.