Science begins in human wonder before the immensity and complexity of the natural world, but then becomes appropriated by social interests that apply its discoveries in humane as well as inhumane ways. So we are right to pay attention to the ethics that underly the development of new technologies. One of the most promising, but also one of the most controversial scientific applications today is the use of stem cells to help us understand and remedy terrible illnesses.
In 2004 California voters overwhelmingly approved Proposition 71, the “Stem Cell Research and Cures Initiative.” This measure authorized the state of California to invest $3 billion in stem cell research, with the aim of healing diseases and injuries such as Parkinson’s, Alzheimer’s, juvenile diabetes, MS, ALS, spinal cord injury, and some forms of cancer and heart disease. Prop. 71 established a new Institute, the “California Institute for Regenerative Medicine” (CIRM) to conduct the state’s publicly funded research, and grants responsibility for administering the Institute to a 29-person “Independent Citizens Oversight Committee” whose members are appointed by state officials.
Immediately following this victory at the ballot box, it looked as though the path forward for government-funded stem cell research, including embryonic research, in California would be sunny and unobstructed. But while research advocates here in California were breathing many sighs of relief, the opposition—consisting mainly of religious fundamentalists who believe that a five-day old embryo possesses a “right to life”—was gearing up to challenge the initiative in court. Their law suit, claiming that the initiative violated the California Constitution, was successful in preventing the public funding of stem cell research from getting underway.
A year and a half later, in May 2007, the legal challenges to the initiative finally came to an end, when the California Supreme Court allowed lower court pro-research decisions to stand. Again, advocates of the research thought that now, at last, the California Institute for Regenerative Medicine would begin to carry out its voter-approved mission without interference.
Sacramento decides to intervene
No such luck. The California Legislature decided that it should have a hand in administering implementation of the research initiative, although the pro-research initiative passed by the voters explicitly places administration in the hands of the “Independent Citizens Oversight Committee.” Currently leading the Legislature’s effort is Sen. Sheila Kuehl, who for many years has also been trying to enact single payer healthcare here in California.
In support of low-income Californians, Kuehl’s Senate Bill 1565 specifies that new therapies developed by CIRM-funded research must be made affordable to those who have no health insurance. The intent behind this provision is admirable—no human being should be deprived of effective medical treatment. Yet Kuehl’s accessibility provision is flawed. First of all, CIRM has already put into place reasonable guidelines governing the pricing of new therapies. Second, the way to assure everyone’s access to medical treatment is not to single out specific therapies as Bill 1565 does, but to obtain single-payer health care for all Californians. (That is the aim of Kuehl’s single-payer legislation, which certainly deserves our full support.) Most CIRM-funded research will take place in universities and non-profit institutes. But some grants will also go to private companies, especially for the purpose of bringing stem cell-based therapies to the marketplace. If CIRM-funded biotech companies lose too much control over pricing, they will have no incentive to develop these therapies, since they cannot count on economic compensation for their work.
We should remember too that, in many cases, stem-cell based therapies will be quite cost effective, and therefore accessible to people with limited economic means. Consider heart disease for example. Whereas a heart transplant costs hundreds of thousands of dollars, and encounters immune system resistance (which is expensive to treat), a transplant of heart stem cells would be much less expensive and—if the cells were derived from the patient’s own tissue—would generate no immune system resistance at all.
There’s an additional problem with the stem cell legislation that Sen. Kuehl is proposing. It diminishes the priority that Proposition 71 gives to funding embryonic stem cell research specifically. That isn’t surprising, since Kuehl’s bill is co-sponsored by Sen. George Runner, a conservative, anti-choice Republican. Although progress has recently been made in using adult stem cells in place of embryonic ones, nearly all of the scientists doing work in this domain agree that embryonic stem cell research remains essential to advancing this new science. Since the federal government hardly funds embryonic stem cell research at all, Prop. 71 specifies that this research approach will be our focus here in California.
Stem cells make strange political
Receiving bipartisan support, Senate Bill 1565 was passed by the state legislature in late August. The only possibility of halting this bill now lies in the hands of Gov. Schwarzenegger. He’s been supportive of California’s stem cell research program in the past, and advocates of the stem cell search for cures—many of whom are Democrats—are hoping that this Republican will intervene once again and veto this bill.
Over the past several years, we’ve come to realize that stem cell science is interwoven with complicated political and ethical issues. But this research effort is too important to the lives of millions of people, here in California and elsewhere, to become a political football tossed about in Sacramento. Since the passage of Proposition 71 in 2004, we patient advocates have been paying close attention to the establishment of the California Institute for Regenerative Medicine and are impressed with the diligence of Institute personnel, including their dedication to following sound ethical standards. Even in the brief time that the Institute has been funding projects, the scientific results of CIRM-funded research have been extraordinary—over 56 papers have been published in scientific journals.
When modern scientific inquiry was getting underway in Europe in the 17th century, it was allied with a set of cultural values—freedom of inquiry, compassion for those who suffer, and a desire to better the human condition. Notoriously, that alliance hasn’t always held up. But it’s well represented by the California Institute for Regenerative Medicine. Most California legislators, including Sheila Kuehl, are on board with this effort too. On behalf of all those whose lives may well depend on the progress of stem cell research, let’s hope that Sacramento permits this new science to go forward and fulfill its humanitarian promise.
Raymond Barglow is a Berkeley