Chair of the CIRM governing board
When the IOM released its report on the stem cell agency last December, praising us for things they said we had done well but also identifying areas and making a series of major recommendations on how we could improve our performance (you can see those recommendations here), we said we took their recommendations seriously and would act on them promptly.
We have done that. Last week the Governing Board of the stem cell agency, the Independent Citizens Oversight Committee (ICOC), endorsed a framework of proposals that would dramatically change the way the Board works, and directly addresses the concerns and recommendations of the IOM, in particular their feeling that the way our Board works could create a perception of conflict of interest.
Key among the proposals the Board endorsed is that any member of the Board who is appointed from an institution that is eligible to receive money from the agency should not be able to vote, but should instead abstain from approving funding for any and all grants going forward. This puts the economic conflicts issue to bed once and for all.
It was not an easy change to propose and certainly not an easy one for our Board members to approve. They all care deeply about our mission and devote a great deal of thought, time and energy to helping us do our work. So for 13 of them to agree to abstain from a key aspect of their work was difficult to say the least. And yet they did it because they felt it was important for the overall goal of the agency.
All our Board members will still be able to participate in debates and discussions on research, bringing their experience and expertise to help inform the final decision. They just won’t be able to vote on that decision, and they will continue to refrain from even participating in the discussion of applications submitted by their own institution. As Dr. Michael Friedman, CEO of City of Hope said, having to abstain on some votes is a small price to pay to demonstrate the integrity of the process: “This is necessary to ensure the public trust and I think these compromises are essential to enable us to reassure the public about the integrity of the work we do and to be able to continue with our mission.”
So why did we take this approach? It’s simple. We want people to focus on the great work we do, on the groundbreaking research we fund, and the impact we are having on the field of regenerative medicine not just in California but throughout the U.S. and around the world. As long as there are perceptions of conflict of interest hanging over the Board, this will continue to be difficult. By addressing the IOM’s recommendations and these perceptions of conflict of interest directly and taking them out of the equation we can focus on what really matters, finding therapies and cures for deadly diseases and disorders.
The Board addressed the other recommendations made by the IOM in its report (you can see those here) and while most members supported most of the proposals no one began the meeting by supporting them all. What is important is that we all realized that we had to compromise for the greater good. We all had to stand back and understand that we had to put our own individual desires aside in the best interests of the agency. We knew that if we didn’t make these changes, then we could never shift the spotlight away from how we operate, and focus it instead on what we do. And ultimately that is what is truly important.
At the meeting on Wednesday a number of patient advocates spoke. As always their eloquence and passion reminded us of why we are here. It is not to defend institutional structures, or organizational procedures. It is to help find treatments, maybe one day even cures, for diseases that affect millions of people. Our Board understands that. That’s why they voted to make the changes they did, to put past criticisms behind us and to focus on the future.