On August 9, 2001, Mathew “Willy” Lensch sat with his wife in their Oregon living room and watched President George W. Bush speak to the nation. Millions of Americans had their TVs on, but unlike most of them, Lensch was, as he puts it, “on the edge of my chair, the rest of the universe ceasing to exist.”
Lensch was finishing his PhD in molecular and medical genetics. His research specialty was a genetic malady called Fanconi anemia, which often kills its victims before they reach adolescence. The disease is caused by the malfunctioning of special cells in the bone marrow: stem cells, the precursor cells that create and maintain the body’s supply of blood cells. Fanconi victims’ best hope for a cure, Lensch believed, lay in re-creating their missing blood cells from embryonic stem cells – stem cells derived from an early human embryo, which are unusually adaptable and changeable. Earlier that year, Lensch had accepted a position with a brand-new stem cell group that is now based at Children’s Hospital Boston, a prominent biomedical research center.
That evening, the president was addressing the nation about embryonic-stem-cell research – which was why Lensch was glued to the TV, watching “with fear and trepidation.” Extracting stem cells from an embryo unavoidably destroys it, and in 1996 the U.S. Congress prohibited the government from supporting embryo-destroying research. But despite this measure, scientists had found legal ways to obtain embryonic stem cells, and now some of the president’s supporters were urging him to outlaw embryonic-stem-cell research entirely. Lensch had switched on the television to find out whether what he believed was his chance to help cure an awful disease was going to vanish (along with his new job).
To his relief, Bush tried to find a middle ground. Arguing that scientists had already created “more than 60 genetically diverse stem cell lines,” the president decided to “allow federal funds to be used for research on these existing stem cell lines, where the life-and-death decision has already been made.” But Uncle Sam would not spend any money on new stem cell lines. With this compromise, Bush argued, researchers would be able “to explore the promise and potential of stem cell research without crossing a fundamental moral line.”
At first, Lensch was relieved, even elated. The administration had crafted regulations that allowed publicly funded research on existing embryonic stem cells and hadn’t called for the banning of privately funded research on new cell lines. “I really thought we might be up and running in a few months,” Lensch says.
Today, that reaction strikes him as naive. Bush’s apparently simple decision to withhold federal money inadvertently created an enormous regulatory maze that few scientists have managed to escape. Four years after the president’s speech, Lensch’s team has not yet been able to begin a full research program. Its story is not unusual: with a few exceptions, private funding sources – philanthropies and businesses – have not stepped into the gap left by Washington’s withdrawal. Nor have research groups been able to capitalize on federal funding for the study of existing stem cell lines, partly because they are fewer in number than Bush thought, and partly because of unexpected patent restrictions.
Worse, Lensch says, the small amount of stem cell research that has been permitted is taking place almost entirely without the benefit of public scrutiny. “When research is tied to the federal government, there’s a whole structure of oversight to make sure that it’s performed for the public good,” he says. “When you cut the tie, it’s the Wild West – there’s no rules.… In the name of preserving morality, the president’s decision has ended up creating moral anarchy.”