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Please begin with an informative title:

In Northern California on January 23rd? Care about stem cell research? Read on.

Intro

You must enter an Intro for your Diary Entry between 300 and 1150 characters long (that's approximately 50-175 words without any html or formatting markup).

CALIFORNIA STEM CELL PROGRAM THREATENED—AGAIN!

By Don C. Reed

California’s stem cell program began as Proposition 71, a citizens’ initiative. Voted into law by more than seven million state citizens, it became the California Institute for Regenerative Medicine, or CIRM.  It has been a tremendous success, bringing more than $1.6 billion to researchers previously starved for reliable funding. Twelve new research centers are in operation today, and California is the stem cell research state.

Perhaps because of its very success, the CIRM has also been under continuous attack. Those who oppose “big government” have massacred whole forests of trees for newspaper editorials; lawsuits from the Religious Right attempted to outright shut us down; micro-managing legislators even tried to rewrite our program. Sometimes the opposition had good points to make, which were adopted. Other changes would have been detrimental, and had to be opposed.  

The most recent attack is a very negative study:  “Committee on a Review of the California Institute for Regenerative Medicine: Health Sciences Policy; Institute of Medicine”, available at: http://www.nap.edu/....  

While it has no power on its own, the report could well be used as a basis for legislation, imposing new restrictions on a program which has earned its right to exist..

The study begins positively enough, stating that our program:

 “… enhances California’s position as key international hub of activity in regenerative medicine…

 “…enriches regenerative medicine everywhere...

 “(has an)…impressive grant management structure…

 “…exemplary training program…

“(and)…translational projects (ready) for industry involvement.”

But then the study goes on to suggest enormous changes, some of which could devastate the program, and conceivably violate California law. Our state voted for the program to be set up in a very specific way, and its structure is now part of our state Constitution.  

The study would gut the power of our board of directors, the Independent Citizens Oversight Committee (ICOC), a 29-member panel of experts.  

The study believes because some board members work for colleges, they have a conflict of interest, and might use their votes to benefit their personal organizations.  It says:

“They (board members) make proposals to themselves…regarding what should be funded. They cannot exert independent oversight.”

 This is false, and demonstrably so.

Members of the governing board NEVER “make proposals to themselves”, and are in fact prohibited by law from so doing.  

Instead, here is what actually happens before the research money goes out.  

First, California scientists offer their proposals. These are evaluated by the Grants Working Group, (GWG), a panel of out-of-state stem cell experts.

Each project receives a numerical score, from 1-100. After being scored, the projects are brought before the board at a public hearing.

The grant proposals fall into three categories, essentially YES, MAYBE,  and NO.  

The projects are listed (in order of scoring) on a big screen in the auditorium. The YES recommendations are at the top, the NO at the bottom—with the MAYBEs of course in the middle!

Before the meeting, the ICOC will have read the proposals (as may any member of the public) posted on the CIRM website (www.cirm.ca.gov)..

The chairperson will ask: does anyone believe a particular proposal is in the wrong category? Should any experiment at the top be moved down, or vice versa?  

In  most case, perhaps  90% of the time, the ICOC agrees with the recommendations.  

But any board member may ask for more information on a particular grant.

When this happens, CIRM’s scientific staff will give its opinions, trying to sum up the pro and con arguments as objectively as possible. Also, the grant applicant may point out errors in the scientific critique, if he or she feels the project was rejected unfairly. The board makes comments-- and we in the public give input.

Example:  a recent grant proposal for fighting Alzheimer’s disease  was put in the “do not fund” category. It was a serious decision, a $20 million project. But as a patient advocate, I had studied the proposal, and thought it made sense. The scientists had actually gotten memory return in the laboratory mice, which to my knowledge had never happened before. So, in the three minutes allowed to any member of the public, I argued in support.    

http://www.researchstore.com/...

The discussion was vigorous, and lasted about 45 minutes. After all sides had been heard, the board voted.

The Alzheimer’s project won, and is going forward today. But without the public decision-making process we have right now, it would have died.

And this, unfortunately, is what the IOM study wishes to destroy.    

“The board…should not be involved in day-to-day management. (It) should delegate day-to-day management responsibilities to the President…” –section 3, page 11

 “Day-to-day management”? That means deciding who gets the money.  Giving grants for stem cell research is everything; exactly what the program is about. Take away that responsibility from the board of directors, and they might as well go home.  

Instead, who does the study recommend should make those decisions, instead of our current 29-member board, the public, the scientists, and everything out in the open?

Two people, working behind closed doors, with no real accountability to the public.

“The Senior Vice President and the President…decide on a final slate of proposals (research projects) to submit to the ICOC for a “yes” or “no” vote on the entire slate.
…the ICOC… should NOT (emphasis added) be empowered to evaluate individual applications…..”)— Section 4, page 18

The Board could not vote (or even voice an opinion) on individual stem cell research projects.  Instead, it would only have an up or down vote on groups of projects, (the “final slate of proposals”) perhaps 50 at a time. If the only choice was between all the research or none of it—the board would be almost forced to approve it all.

Funding decisions to be made in secret,  the public cut out of the loop: and our Board reduced to a rubber stamp—this is  not an improvement!

On January 23rd, there will be a public meeting at the Claremont Hotel in Berkeley to discuss these changes. Meeting details will be posted at www.cirm.ca.gov.  The public is urged to attend.

Or, send your opinions to the Chairman of the Board, Jonathan Thomas, Jthomas@cirm.ca.gov.

Help California keep the program which we voted for.

Extended (Optional)

Originally posted to diverdonreed on Sat Jan 12, 2013 at 10:07 AM PST.

Also republished by Dream Menders.

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