THE BLOG
07/07/2014 05:23 pm ET Updated Sep 06, 2014

Selling Stem Cells Honestly

Scientists around the world are campaigning in favor of sensible regulation of stem-cell therapies. We at the Center for Genetics and Society have two reactions: (1) kudos for this important work; and (2) it's about time.

The highest-profile selling-stem-cells scandal recently is in Italy, where the Stamina Foundation has been described as a "criminal organization that has defrauded about a thousand patients since 2006 by administering a dangerous and unapproved [stem cell] treatment in exchange for money." A profile in The Verge describes its founder, Davide Vannoni, as a "con man," and a long article in Nature by scientists Elena Cattaneo and Gilberto Corbellini details their exhaustive (and exhausting) efforts to stop him:

We recommend that all scientists stand up for the scientific method. Science depends on public institutions and is done in the public interest -- we have a duty to defend both.

The recent conference of the International Society for Stem Cell Research (ISSCR) opened with a panel discussion about how to sort the real from the bogus treatments. (Note: none of this is in any way related to the STAP cells controversy.) ISSCR's website includes a useful fact sheet, a backgrounder on "How Science Becomes Medicine," and even, on the front page, a link to the 2010 60 Minutes investigative report on "21st Century Snake Oil."

ISSCR and 12 other organizations, including the California Institute for Regenerative Medicine (CIRM), worked together last year to issue a "Patient Advisory for Stem Cell Therapy and Medical Tourism." Former CIRM President Alan Trounson wrote a related opinion piece in The Scientist, on "Thwarting Medical Tourism":

It's time to take a strong stance against unregistered cellular therapies, which can undermine legitimate research efforts.

Trounson still calls for increased funding of stem cell research. And CIRM is still promoting the development of cures, certainly, but is putting some effort into explaining why they may yet take a while.

This is a welcome change. A little perspective is called for, however: CIRM was sold to the public in 2004 with the strong implication that cures were imminent. The Proposition 71 Voters Guide argument in favor was presented by Cures for California, and the initiative was presented as "Proposition 71, the California Stem Cell Research and Cures Initiative." (It was also going to be an economic miracle.)

Scientists led the way in talking about "life-saving cures" and advocates campaigned under the slogan "Countdown to Cures." Professor and entrepreneur Irv Weissman donned a white coat for commercials, presented himself as a doctor, and assured the TV audience:

The chances for diseases to be cured from stem-cell research are high.... If the promise of stem-cell research comes true, we can hope for a single treatment with the right stem cells to cure diseases every family has.

The hype wasn't limited to California, as Marcy Darnovsky explained in Democracy:

On the national scene, vice presidential candidate John Edwards told a crowd in October 2004 that embryonic stem-cell research would allow people like Christopher Reeve to "get up out of that wheelchair and walk again." In a speech at the Democratic convention, Ron Reagan Jr. predicted that cloning-based stem-cell research could produce for each of us a "personal biological repair kit." The rhetoric grew so heated that Princeton University President and geneticist Shirley Tilghman, a supporter of such research, warned that "some of the public pronouncements in the field of stem-cell research come close to over-promising at best and delusional fantasizing at worst."

Of course, the claims of cures around the corner carefully avoided including a timetable. But in a report published two days after the election, Weissman told the San Francisco Chronicle:

If somebody comes up with a saleable product in five years, I'll be shocked. If we don't have lots of therapies in 20 years, I'll be even more shocked.

Right. There has been a decade of hype about the potential of stem cells. CIRM is approaching the end of its mandate -- and money -- and looking for more. All of a sudden, they are taking a more ... realistic ... line. But is it really any surprise than some patients are, well, impatient?

Some scientists have been taking a more balanced view all along. UC Davis Professor Paul Knoepfler's Stem Cell Blog, in particular, has been doing great work for several years critiquing while also supporting the field. Knoepfler designated Elena Cattaneo 2013's Stem Cell Person of the Year; the ISSCR awarded Cattaneo along with Paolo Bianco and Michele De Luca the 2014 Public Service Award.

It's excellent that more scientists are now publicly calling for oversight. Perhaps they will learn a broader lesson: Do not over-promise "cures" in an effort to raise money. Or, as Bianco and Douglas Sipp, another long-time monitor of the field, argued in Nature last week: Sell help, not hope.

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