Wanna play stem cell Whack-a-Mole?
Uh, no.
I was listening to NPR while commuting home the other day and heard an interesting story about the history of YouTube and its legal issues with film studies. It was quite interesting and, of course as a stem cell fan, a link with stem cells came to me later that night.
What?
Yeah. Keep reading…
You see, YouTube began as a rebel web company that indisputably broke the law on a previously unheard of scale: millions of times.
It contained copyrighted content in the form of millions of videos that had been uploaded illegally. In my opinion, there was no question that YouTube was a lawbreaker on a mindboggling scale.
The studios fumed. They sued. They tried to track their content on YouTube, complained, and specific content was pulled down. However, copyrighted content was uploaded to YouTube so fast and watched by so many people that the studios were overwhelmed. It was impossible to track. The studios were definitely in the right legally. They knew it. YouTube knew it. The people uploading to YouTube knew it. The courts knew it. The viewers including me knew it.
But it didn’t matter.
YouTube was so viral that the studios’ case became helpless.
NPR quotes Vin Di Bona, TV producer and creator of American’s Funniest Home Videos. Di Bona found that early on his show was popping up on YouTube like wildfire.
Di Bona called his lawyer, and the cease-and-desist chase was on. But it was his responsibility to search the site for pirated material and have it taken down. “It was like playing Whack-A-Mole,” says Di Bona, “You know, whack the mole and six more would pop up, and those were my clips.”
So what happened next?
The studios decided to be pragmatic and basically rather than fight, they teamed up with their former bitter enemy, YouTube, to try to make money out of it. They made a deal with the devil and in the end they have profited nicely from it, but there was still damage to them because they in essence lost some element of control over their content in an unprecedented way. They were in a no win situation.
What does this have to do with stem cells?
I think we are in a somewhat analogous position in the evolution of the stem cell field today. The FDA is like those movie studios and the courts. The FDA may not be yet, but they are heading inexorably toward a point where they will eventually be overwhelmed by the number of rebel stem cell clinics out there, many of which do not follow the law. The number of such clinics is growing rapidly and as I said yesterday, I think there could be a future tipping point where the FDA could be simply overwhelmed. In the end the FDA and state medical boards may play a frustrating version of stem cell Whack-A-Mole. Ultimately the stem cell field and patients will pay the price.
The lesson is that right or wrong, legal or illegal, if a phenomenon becomes of a certain size and its growth accelerates beyond a certain clip, there is very little that anyone can do to stop it even powerful government agencies.
My hope is that the FDA and other states and federal regulatory agencies will strike now and strike very hard while there is still time to control dubious stem cell clinics.
If not, then soon it’ll be too late. Whack!
The worrying bit is that nobody has died from a pirate youtube clip, whereas quite a few people have either died or suffered serious health problems. I dont know what kind of compromise could be reached that was of benefit to everyone.
Here the national healthcare system can use still-on-trial drugs in patients with serious conditions as part of the rules of compassive use (As per R.D. 2009: http://tinyurl.com/cufhlmh). Maybe something simmilar could be done with these people, and get them to use only FDA-overseen treatments? At least this would be safer than having them injected with hell-knows what.
But then the question would be, how would this get funded? I don’t think it would be ethical to charge patients for not-quite-proven therapies. Also, how would we decide which ones “look good enough” to warrant early use? And how would the rogue stem cell clinics encouraged to follow this path instead of what they were doing before?