An urgent need for the California Institute for Regenerative Medicine to delay grants until guidelines in place

The Center for Genetics and Society, an Oakland-based research and advocacy organization, called today for the Independent Citizens Oversight Committee, the governing body of the California Institute for Regenerative Medicine, to enact specific standards and safeguards before appointing members to working groups, issuing grants, or making commitments for buildings or capital investments.

Among the urgently needed standards and safeguards are meaningful conflict of interest rules for ICOC and working group members, full compliance with California’s Open Meetings Act, protections for subjects asked to participate in clinical trials and egg extraction procedures, clarification of the role of the California Research and Cures Coalition, and clarification of what Californians can expect in terms of financial returns and accessibility of any successfully developed treatments.

California voters approved the creation of the Institute for Regenerative Medicine with November’s Prop. 71. The Institute’s Independent Citizens Oversight Committee meets for the second time on January 6 in Los Angeles.

“Prop. 71 advocates and the officers of the ICOC have said repeatedly that the huge sum of public money entrusted to them will be used in an open and responsible manner,” said Marcy Darnovsky, associate executive editor of the Center. “The early record falls well short of those promises.”

Similar and additional concerns about the stem cell research initiative, and the first steps in its implementation, have been voiced by public interest lawyer Charles Halpern in a January 3 letter to the ICOC that was released to the media. “I find that the Bagley-Keene Open Meetings Act is still not being complied with and that the [ICOC] is being invited to rush into the core of its work without having laid an appropriate foundation,” Halpern wrote.

In addition, State Senator Deborah Ortiz, who supported the passage of Prop. 71, has introduced SB 17, legislation to address what she now characterizes as the initiative’s “flaws,” including areas in which it “falls glaringly short.”

Others are also speaking up. “We’re seeing growing concern about the stem cell institute from advocates of open government, consumer rights, women’s health, responsible business, and responsible science. Even prominent supporters of 71 are now highlighting the law’s shortcomings,” said Jesse Reynolds, the Center’s program director. “All eyes are on California and the Institute. We’d best do it right by having clear, strong, and effective policies in place.”

The Center has proposed a number of specific standards the ICOC should adopt. Among these are:

• Fully disclose the financial interests and board memberships of ICOC members, and require that they own no stock in biomedical companies (as ICOC Chair Robert Klein has pledged), or in real estate or construction companies that can benefit from Institute grants.
• Publicize detailed meeting agendas and supporting documents at least ten days before each meeting, and provide a detailed transcript available soon after, in keeping with California’s Bagley-Keene Open Meeting Law and Public Records Act.
• Hold members of the Institute’s working groups and other committees to the highest standards regarding disclosure of and restraints on conflicts of interest, and the working groups and committees themselves to policies that ensure public oversight and participation. The ICOC can set such standards in spite of language in Prop. 71 exempting the working groups and other committees from aspects of California’s Bagley-Keene Open Meeting Law, Public Records Act, and Political Reform Act.
• Strictly regulate cloning technology by using an application, permit, and tracking system. One model for such a system is in use in the United Kingdom.
• Adopt rules for egg extraction that offer the highest possible protection to women providing eggs for research purposes.
• Clarify the relationship between the Institute and the California Research and Cures Coalition, a private organization dedicated to increasing public support for the Institute that – like the ICOC – is chaired by real estate financier and millionaire Robert Klein.

The Center for Genetics and Society is a nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of the new human genetic and reproductive technologies. The Center supports abortion rights and embryonic stem cell research, but opposed Proposition 71 as part of the Pro-Choice Alliance Against Proposition 71.

Contact: 
Marcy Darnovsky
510-625-0819 x305

Jesse Reynolds
510-625-0819 ext 308