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| Assemblymember Nancy Skinner (D-Berkeley) |
Coupled with the advice of a doctor, access to online libraries such as PubMedCentral, which provides access to federally-funded biomedical research, can provide patients and their families with various long-term treatment options and can empower them to make educated health decisions.
Since 2006, the California Institute for Regenerative Medicine has funded innovative research in the areas of Alzheimer’s disease, autism and leukemia, to name a few. Until now, the publications containing the results of this research have not generally been available to the public. And even though CIRM requires grant recipients to submit a 500 word summary of their research, neither the publications nor the summaries are currently available on CIRM’s website.
Earlier this year, I discussed with the CIRM Governing Board my intentions to bring forward legislation to make their groundbreaking research available to the public. As a result of those conversations, the CIRM board unanimously voted on March 21, 2012 to develop an open access policy. This week, the Board will transmit the regulation to the Office of Administrative Law, initiating a public comment period prior to final adoption of the rule.
It is worth remembering that 2004’s Proposition 71 California Stem Cell Research and Cures Act, the initiative creating CIRM, passed with over 59% of the vote and that that the initiative to authorize $3 billion for stem cell research was, and remains, entirely novel: direct public funding of specific scientific research. At the time, researchers and the public were frustrated by the Bush Administration’s actions to restrict stem cell research. Proposition 71 posited that it was in the best interest of the State of California to fund research that may help find cures to multiple sclerosis, diabetes, and other diseases.
Since its passage, scientists at academic institutions and industries have used CIRM’s funding to pursue original and important research into stem cell therapies. Their results have been published in prestigious peer-reviewed publications, bringing potential stem cell therapies closer to reality.
In the words of CIRM Board Member Joan Samuelson, Californians are “funding the research and results” and are eager to see the benefits and potential of stem cell research. Access to publications is one way to demonstrate CIRM’s value to the public funders.
Similar open access policies have already been in place for researchers funded by the National Institutes of Health – or NIH. Since 2008, the NIH open access policy has required NIH-funded researchers to make their peer-reviewed papers available for free on www.PubMedCentral.gov. With PubMed Central, millions of researchers, industry, and the general public are able to directly access information about diseases, empowering them to understand sometimes deeply personal issues. This searchable library of federally-funded biomedical research is a wonderful demonstration of how to improve access to our most valuable public resource: knowledge.
Our experience with PubMedCentral demonstrates that the benefits of a public access policy are tremendous, while the downsides and arguments against such a policy are overstated. Such policies also provide a way to improve accountability for publicly-funded programs like CIRM. The proposal for CIRM’s new policy mirrors the NIH’s open access policy, and even if it’s a bit overdue, it’s a good step toward transparency and will make CIRM-funded research even more valuable to the people of California.
Assemblymember Nancy Skinner represents the fourteenth Assembly District, which includes Albany, Berkeley, Canyon, East Richmond Heights, El Cerrito, El Sobrante (part), Emeryville, Kensington, Lafayette, Moraga, Oakland (part), Orinda, Pleasant Hill, Richmond, Rollingwood, San Pablo, and Waldon (part).
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