Democratizing Stem Cell Science
When California voters went to the polls in November of 2004, one of the most controversial items on the ballot was the Stem Cell Research and Cures Act (Prop. 71), which passed with 59 percent of the vote, creating the new California Institute of Regenerative Medicine (CIRM). However, a lawsuit challenging the initiative’s lack of congressional oversight has held up the release of funds. That suit was spearheaded by conservative groups who oppose stem cell research on pro-life grounds, but even many supporters of stem cell research have expressed concerns about public accountability. Currently, oversight is provided by the Independent Citizens Oversight Committee (ICOC). CIRM has already held dozens of public meetings to air concerns, including how commercial benefits from newly discovered procedures will be distributed.
A bigger question looming over CIRM is who stands to gain. According to David Winickoff, an assistant professor of bioethics and society and early critic of the ICOC model of governance, safeguarding the public benefits of the initiative involves policy areas that haven’t captured much attention. For example, the delivery of health benefits and need for egg donations for research material are problematic. How can women be expected to undergo the harrowing process of donating eggs to science if the distribution of benefits is not clearly mapped out?
At present, there is little room for public participation in the policy area of biomedical research, but Winickoff believes that public involvement in the initiative’s governance would make it more likely to do right by the financial contributions of taxpayers and the biological contributions of egg donors, an idea he presented to the ICOC in a fall 2005 white paper.
Rather than relegate the guidance of the initiative entirely to scientists, politicians, and biotech executives, Winickoff proposes an innovative model of governance that would use existing charitable trust law to create a framework for involving the donors of biological material. Under this model, CIRM would require that any new cell lines created with state money be propagated and banked in a new state-wide stem cell bank. Unlike other stem cell banks around the world, this “public biorepository and trust” would require the appointment of egg-donor and community representatives to its steering committee, ethics review board, and board of trustees as conditions of egg and embryo donation. Winickoff believes that creating such a legal and social architecture could better promote the free sharing of cell lines, minimize the number of surgical egg extractions, and increase accountability to the public.
Winickoff hopes that this model will be implemented by the state to ensure that both donor rights and the production of affordable therapies remain at the forefront of CIRM’s agenda. “Responsible scientific advancement, and not the economic development of the biotech industry, is the heart and soul of what the people of California voted for,” he says.