Fwd: [GRG] Patients Beware: Commercialized Stem Cell Treatments on the Web

[Bryan Bishop]

Patients beware: commercialized stem cell treatmets on the web
pdf: http://download.cell.com/cell-stem-cell/pdf/PIIS1934590910002833.pdf

---------- Forwarded message ----------
From: Daniel Ward <aka...@me.com>
Date: Sat, Jul 17, 2010 at 5:31 PM
Subject: [GRG] Patients Beware: Commercialized Stem Cell Treatments on the Web
To: g...@lists.ucla.edu


Greetings all,

Here's a link to the Cell Stem Cell, 17 June 2010, open access interim report of the International Society for Stem Cell Research (ISSCR)'s Task Force on Unproven Stem Cell Treatments, which outlines its "development of resources for patients, their families, and physicians seeking information on stem cell treatments."

http://www.cell.com/cell-stem-cell/abstract/S1934-5909(10)00283-3
http://copd.about.com/b/2010/07/17/stem-cell-treatment-and-copd-the-darker-side-of-isscr.htm

Let's hope it helps!
Daniel

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[Bryan Bishop]

On Mon, Jul 19, 2010 at 11:46 AM, Bryan Bishop wrote:
> Patients beware: commercialized stem cell treatmets on the web
> pdf: http://download.cell.com/cell-stem-cell/pdf/PIIS1934590910002833.pdf

Hm so this is a difficult topic..

Anselm previously warned us about this a months ago, actually:
http://groups.google.com/group/diybio/msg/07e7e6f4f7c7e8b4
in repsonse to: http://blogs.discovermagazine.com/80beats/2010/06/07/stem-cell-tourists-denied-costa-rica-stops-treatments-at-top-clinic/

As he put it: "BTW:  The one place western diybio should steer completely clear of for the time being is clinical therapeutics.  Going quack is the best way to earn federal ire and get regulated into the ground. (diagnostics, information services, etc. are another thing entirely though)"

I agree with you, Anselm, especially about **not** going quack. The number of quack stem cell clinics is going to continue to rise dramatically. There's a few reasons for this- it's ridiculously profitable, it's really not that complicated to set up a clinic, and patients absolutely love them for offering treatments they keep hearing about in the news, but that are never delivered. The situation is screaming "exploit me, exploit me" but also "save me, save me" and there's a fuzzy line between the two.

So someone sets up a clinic, starts advertizing, manages a few flights / concierge services for patients, and steals their money. They can probably do this 20 times before they have to move on and set up a new clinic (if anyone cares to oust them). Heck, I bet some clinics boostrapped themselves into existence just by spending a few hundred bucks on advertizing first, and getting a downpayment on a treatment that they then use to rent an office, it's sick. I haven't investigated these clinics much, but I bet there is a range of quackery- everything from "oh we'll just put you under anesthesia" to procedures that actually involve stem cells, and maybe even cases where something "works" or they get lucky on a placebo effect etc.

Based on the recent trend of individuals wanting to monetize diybio and transform it into startupland- and how little financing the majority of its participants have- I can't help but predict that there will be some people who get drawn into this culture of stem cell clinics. I hope it doesn't happen, but it probably will. It's hard to see past the hype and miraculous claims, and even harder to do good biology, plus this giant (green) carrot in front of their face to distract them.. yeah.

There's a descrepancy here. Most of us (including myself) condone these shady clinical practices. At the same time, it's within the realm of possibility that there exists-- with practical benefits-- some devices, kits, testing procedures, medicines and drugs that are not approved by government/commercial authorities. After all, without a healthy supply of innovations to work off of, the FDA would go "out of business" not having anything new for its pipelines, and some of these can be from informal, non-institutional settings. So far there has been nothing less than complete agreement in the diybio community that biosafety and not killing people are really important, good ideas.  Let me emphasize that again: "not killing people" is a really, really good idea.

One argument I've heard is that all of this is outside the scope of garage biotech and DIY, but I am not so sure. One of the reasons for my hesitance is because DIY is quickly growing to mean non-institutionalized, democritized biology. Like any other quack biology theory or medical practices, maintaining information and helping to educate people is worthwhile, but might be a losing battle if you make that your primary mission in life (instead, give them something else to fixate on).

Having said all that.. I was wondering if anyone else can share some pointers on how these clinics are running, what their tactics are, how to spot them, whether or not they commission or execute scientific studies, and whether those studies have been found repeatable or not. Anyone?

Reminds me of xkcd #749: "Volunteers needed for a study investigating whether people can distinguish between scientific studies and kidney-harvesting scams."
http://xkcd.com/749/