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Not Your Typical Conference
CHORI Partners with Greenlining Institute and UC Berkeley Project on Stem Cells and Society for the Toward Fair Cures Conference

On October 14, 2006, CHORI was proud to partner with the Greenlining Institute and the University of California, Berkeley Project on Stem Cells and Society in hosting the Toward Fair Cures Conference. A unique gathering of leaders from minority communities, academia and the sciences, the conferences was designed to provide input to the California Institute for Regenerative Medicine (CIRM) and raise awareness among minority communities.

“The CIRM is the state agency established to distribute and regulate the 3 billion dollars of state money that’s being invested in stem cell research as a result of Proposition 71,” explains Josef Tayag, a program manager at the Greenlining Institute.

Although the proposition allowing stem cell research to be conducted in the state of California is still tied up in the courts, Governor Arnold Schwarzenegger earlier this year granted a $150 million loan to move the research forward in advance of the judicial rulings. In the meantime, however, many questions have yet to be resolved about how that stem cell research will be conducted.

“Which diseases will get prioritized fairly for research funding?” asks Mr. Tayag. “Will models of lowest hanging fruit be used? Or will they take into consideration what the diverse population of California needs most?”

The CIRM primarily will be responsible for answering such questions, which is why the Toward Fair Cures conference was so essential.

“It all goes back to the historical exclusion of minority communities in scientific leadership,” explains Mr. Tayag. “The question lingers as to how the very diverse population of California will benefit in the multi-issue based decisions the CIRM is going to be making.”

In order to help guide the CIRM in its decision-making, the conference brought together this diverse group of leaders to learn more about issues of diversity and how minority communities will be effected, as well as to begin a discussion between these leaders of how to level the playing field in terms of minority needs.

Already a national leader in cord blood stem cell research through the Sibling Donor Cord Blood Program , CHORI was a natural partner for the conference.

“We’ve already demonstrated the value of stem cells taken from cord blood in the treatment of children with sickle cell anemia,” explains CHORI president Bertram Lubin, MD, who was one of many panelists involved in the conference. “We’ve helped many families and children with sickle cell with this program, and many children with sickle cell anemia are now cured.”

CHORI is also known, however, for its outreach in the Oakland community, and its emphasis both on engaging local minority and underserved populations in issues of scientific research and striving to meet community needs. As such, CHORI was one of many advocates at the conference looking to help define a role in stem cell research that addresses the diverse populations in California.

“Unlike many standard scientific conferences, ours was geared toward looking at issues beyond the laboratory and trying to examine the institutional factors at play,” says Mr. Tayag. “We pointed to problems and tensions, but we also posed possible solutions. It was an absolute success.”

That success goes beyond the open dialogue established at the conferences, however. All panelists were also asked develop their own suggestions on how to make the stem cell research program best serve California’s diversity. The Greenlining Institute will be compiling these recommendations in an overall report which will be sent directly to the CIRM and to the general public.

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Monday, May 16, 2011 11:33 PM

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