Wednesday, December 03, 2014

A Public Mystery at the $3 Billion California Stem Cell Agency

The latest proposal by the California stem cell agency for apparent clinical testing of stem cell therapies could be a $2 million effort or $20 million effort. It could be designed to tackle Alzheimer’s or cancer. It could involve commercial firms or just research institutions.

But no one – outside of the agency – really knows. With only two business days before the proposal is scheduled to be considered by the agency’s directors, it remains under wraps as far as the public is concerned. It is a public mystery.

All that the public is allowed to see as of noon today is a cryptic, eight-word description – “concept plan for new clinical phase development program.”  Indeed, it might not even be a clinical testing program. The language is so vague it could be some other sort of clinically related effort.

The agency’s transparency rules require that agendas for meetings be posted 10 days in advance. However, they do not require that anything truly meaningful be supplied on the agenda. Back in the not-so-good, old days at the agency, important material explaining what was to be considered sometimes was not even available until the day of a meeting. Sometimes board members complained about delays in seeing material for meetings. Sometimes meetings were cancelled as a result.

In many ways, CIRM, as is the agency is known, is now exceedingly open and transparent. In other ways much less so. The problem with the clinical item to be considered Monday by the CIRM directors’ Scientific Subcommittee is an example of the latter.

The agency makes much of its attempts to engage and inform the public – not to mention researchers and the stem cell community.  CIRM says it wants input from all the stakeholders. But no comment – good, bad or indifferent – can be made when the only information available is so limited that it is meaningless.

Researchers particularly have something at stake. Poorly conceived concepts result in poor requests for applications which then result in poor proposals from scientists. Without spelling out just what is being considered well in advance, it is impossible for researchers to comment constructively or otherwise in a timely fashion.

CIRM can and should do better. 
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1 comment:

  1. Anonymous1:17 PM

    The plan is to be presented to the full ICOC at the Dec. 11 meeting under the equally cryptic:

    7. Consideration of concept plan for the clinical stage program announcements.

    "[Members of the Public will be invited to provide testimony before or during consideration of each agenda item. Speakers are asked to limit their testimony to three (3) minutes.]"

    Difficult to provide testimony on the unknown.