The Why Files The Why Files -- whyfiles.org

Stem cells beyond federal funding embargo
POSTED 19 MARCH 2009

Letting science be science

In last week's announcement about liberalizing rules on stem cell research, President Obama placed the changes in the context of a sweeping need to cleave politics from science policy:

Promoting science isn't just about providing resources -- it's also about protecting free and open inquiry. It's about letting scientists like those who are here today do their jobs, free from manipulation or coercion, and listening to what they tell us, even when it's inconvenient -- especially when it's inconvenient. It is about ensuring that scientific data is never distorted or concealed to serve a political agenda -- and that we make scientific decisions based on facts, not ideology.

Embryonic stem cell transplant in a rat
with Parkinson's disease

The transplant image shows a red circle representing dopamine about 60 percent the size of normal
Images: NIH
Normal: PET scan of a normal rat brain shows presence of dopamine, a key neurotransmitter, in both sides of the brain. Lesion: After the brain region implicated in Parkinson's was damaged, dopamine uptake ceased. ES Transplant: After transplant of brain cells derived from embryonic stem cells, dopamine uptake is partly restored.

If you read The Why Files, you know the issue. During the George W. Bush Administration, there were a "number of situations in which politics appeared to interfere either with doing scientific research or with reporting the results of scientific research," says Alta Charo, a medical ethicist at the University of Wisconsin-Madison. She notes that a National Cancer Institute website exaggerated the risk of breast cancer after an abortion; the Department of Health and Human Services rejected studies showing the failure of abstinence-only sex education; and the administration depreciated the reality of climate change.

Unjustifiable editing? As Obama calls for the removal of politics from science, we recall the Bush era, when Senate testimony by Centers for Disease Control Director Julie Gerberding on climate change and public health shrank from 12 pages to six after some delicate editing by the Office of Management and Budget.
A joke climate change paper strategically redacted to read 'The Whitehouse has been helpful.'

Issues remaining

Although Obama's decision was widely greeted in the scientific community, questions remain to be answered:

embryonic stem cellWhat will the fine print say? Opponents have trumpeted the scary notion of "unrestricted" research with stem cells and embryos, but Obama himself ruled out using cloning for reproduction, and gave the National Institutes of Health 120 days to issue rules on federal grants for ES cell research. Currently, the Dickey-Wicker amendment to budget bills prohibits using tax money to make embryos or support research that injures embryos, so the federal government cannot fund creation of embryos to provide embryonic stem cells. Although Obama did not announce a position on the amendment, eliminating it would be, in equal measure, helpful to researchers who want to control the genetics of their stem cells, and loathsome to opponents of ES cell research. Another question: Will the NIH rules prohibit international transfers from nations with different rules on medical research?

embryonic stem cellWhat about state funding? In the face of the Bush ban, Maryland, Illinois, Connecticut, New Jersey, New York and especially California established mechanisms to fund ES cell research. Will that funding dry up now that the federal spigot is cracking open? It's hard to say, but Alan Trounson, president of the California Institute of Regenerative Medicine, expects the head-start conferred by California's $3 billion in funding to continue helping researchers in his state. "California has been well funding stem cells, the research is very strong, and we are in a more competitive position for federal funding, which is allocated on a competitive basis. I think [California researchers] will do proportionately better than colleagues in other places, who have had a tough time being involved [due to the funding limit]."

embryonic stem cellWhat about safety? Even those who think stem cells have great promise worry about hazards. In February, scientists reported that a boy in Israel had developed brain tumors as a result of a fetal stem cell transplant (performed in Moscow in 2001 to treat a rare brain disorder). "We need to develop methods to clean up the transplant preparation to assure a degree of safety, to deliver the cells you want to deliver, and not anything else," says transplant surgeon Jon Odorico. "That's important from an experimental point of view, and a clinical trial and safety point of view, from a public trust point of view." Otherwise, he warns, "The enthusiasm and promise of the procedure can push us so hard to move forward that initial trials may have tragic consequences, and that will have a recoil effect on the entire field."

embryonic stem cell When will we see some cures? As mentioned, in January, the Food and Drug Administration okayed the first test of embryonic stem cells as a treatment for new spinal cord injury. Other trials, however, are percolating through the medical system, and may get a boost from the Obama decision.

Yang has a ponytail and a white lab coat. She holds an injection tool filled with amber liquid
Postdoctoral fellow Dali Yang's face is reflected in the glass of a fume hood as she prepares stem cell cultures in Su-Chun Zhang's lab at the Waisman Center at the University of Wisconsin-Madison.

And from today onward

Movement toward the clinic is becoming evident in California, which approved proposition 71 in 2004, creating by far the biggest pile of state cash for stem cell research, says Trounson. "We have been strongly funding the basic research, but now is the time to really get into translational, preclinical research. We have a $200 million disease program for projects that can move toward investigational new drug applications within four years that we believe will bring in excess of 100 applications." (Investigational new drug applications, or INDs, are an early milestone for clinical trials of a candidate drug.)

A young teenage boy with a brown buzz cut makes a fast break with a basketball in handA young teenage boy with a brown buzz cut makes a fast break with a basketball in hand
Photo: Steve Levick.
Noah Levick is waiting for some help from embryonic stem cells for his type 1 diabetes. For other people, waiting is a matter of life and death.

To those awaiting real medical benefits from the remarkable discovery of human embryonic stem cells, March 9 was a good day. But Obama's decision brought hope rather than tangible relief: Despite their promise, ES cells have not yet produced any proven cures. The Why Files asked Steve Levick, a Philadelphia psychiatrist, about the response from Noah, his 14-year-old son, who has a type 1 diabetes, and Steve responded. "He glanced at the headline on the Obama announcement, said, 'That's good,' and went off to a basketball game."

Although Noah understood the ramifications of Obama's decision, he was more interested in his game. His father, however, stresses that the calendar pages are still turning for those who need the benefits that stem cell research could provide. Due to the ban, he says, "I imagine a couple years of progress has been lost, because scientists in the United States, which has been the leading light in biomedical science, have really been hampered. Life being a time limited affair, two years is not an insignificant part."

Type 1 diabetes, while serious, is not the worst of the conditions that stem cells might heal. People dying of Parkinson's disease or heart disease could also benefit. Levick recalls talking with the father of a man paralyzed below the neck a spinal-cord injury. "I asked, 'How is your son doing?' and he said, 'He's still paralyzed.' My son Noah is getting on with his life, but for some people, each day of delay is a day they can't spare. They are suffering."

Embryonic stem cell bibliography.
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Terry Devitt, editor; Nathan Hebert, project assistant; S.V. Medaris, designer/illustrator; David Tenenbaum, feature writer; Amy Toburen, content development executive

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