Center for Genetics and Society calls 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. |