Stem-Cell Rebels
The battle over a controversial line of medical research heats up as states strike out against federal restrictions and make their own laws

Katie Zucker, 16, has sky-blue eyes, wild curly hair and a dazzling smile. She is a champion equestrian and an A student. Her parents are doting, her friends devoted. So what's not to envy? Well, there's the small rectangular box attached to her belt that pumps insulin through a tube into her hip. To test her blood, she pricks her finger seven times a day. "It's scary," she says. "If your blood sugar goes too low, you could go into a coma."

If there's any hope for a cure for Zucker and more than 1 million other Americans with Type 1 diabetes, the most debilitating form of the disease, it may lie in a revolutionary new field of research based on manipulating human embryonic stem cells. These building blocks of life, when isolated in a microscopic cluster of cells, can morph into any kind of tissue. (So-called adult stem cells, which can be harvested without sacrificing embryos, can turn into only a few tissue types.) One day, scientists hope, the entire genetic makeup of a patient like Zucker could be transferred into a cloned human egg that can produce the insulin-producing cells her body lacks.

But some religious groups believe the clumps of 100 to 200 cells from which embryonic stem cells are taken represent a potential human life as worthy of protection as any child's. Three years ago, President George W. Bush, under pressure from both sides, adopted a compromise that ended up choking off most federal research funds to the field. He said at the time that although the research offered "great promise" in saving lives, it could lead to "growing human beings for spare body parts."

Today a brush-fire challenge to Bush's stem-cell policy is spreading across the U.S., fueled by the frustration of such families as Zucker's who have allied themselves with patient activists for other diseases, major universities, several state legislatures and members of Congress. In April, 206 U.S. Representatives wrote to the President, calling on him to fund stem-cell research on spare embryos from a pool of some 400,000 stored in the freezers of in vitro fertilization clinics. These embryos, only a few days old and smaller than the head of a pin, will probably be discarded unless they are donated to science.

In a startling rebellion against the federal biomedical establishment, several states are moving forcefully into the vacuum. California and New Jersey have passed laws specifically authorizing the cloning of human eggs to create stem cells (so-called therapeutic cloning). In New Jersey Governor James McGreevey, in a nod to the state's pharmaceutical industry, will inaugurate a $50 million stem-cell institute to be funded with state and private money. In California, activists last month submitted 1.1 million signatures—nearly twice as many as necessary—to launch a November ballot measure that would underwrite stem-cell research with $3 billion in state bonds over 10 years. The California funds would dwarf federal grants, which have stalled at about $17 million a year for human embryonic research since Bush restricted funding to a few dozen pre-existing stem-cell lines. Only 19 of those turned out to be available. Says Stanford Nobel prizewinner Paul Berg: "California is paving the way for a revolt in a lot of other states."

Palo Alto real estate developer Robert Klein, co-chairman of the initiative campaign, forecasts $70 million in tax revenues from new jobs even before any cures are discovered. And if cures are found, the profits would accrue to California companies, along with substantial savings on the state's $114 billion annual health-care bill.

Finances, however, have little to do with Klein's passion for the measure. Like Janet and Jerry Zucker, Katie's parents and the initiative's other chief organizers, Klein is the father of a diabetic, Jordan, 13. In addition, his mother, 84, has Alzheimer's. Distraught at the federal cutoff of stem-cell research, Klein and the Zuckers, who are film producers, were brought together last year by the Juvenile Diabetes Research Foundation, one of the nation's most forceful disease-advocacy groups. They hired a clutch of sophisticated lawyers and political consultants to draft the measure and conduct polls.

It will certainly be a celebrity-studded crusade. The Zuckers and other Hollywood notables were hosts of a recent Beverly Hills tribute to Nancy Reagan that raised $2 million for stem-cell research. The former First Lady, who took up the cause after her husband developed Alzheimer's, had earlier written to President Bush in favor of federal funding. Proponents of the California initiative hope that advocacy by an icon of the conservative movement will help neutralize resistance.

Opponents have barely begun to organize. "We're not Hollywood producers," says Richard Doerflinger, spokesman for the U.S. Conference of Catholic Bishops. "We don't have the money they do." Nonetheless, he says, pro-life groups will explain to voters that embryonic stem-cell cloning is "unpromising for cures" and offers "a gateway to all kinds of possible genetic engineering in humans."

Whatever happens in California is likely to reverberate nationally. Already, breakthroughs in stem-cell science, published almost weekly in medical journals, are ratcheting up the stakes. If the initiative passes in the nation's largest state, "it will put tremendous pressure on the White House to re-evaluate its policy," predicts Daniel Perry, head of the Washington-based Coalition for the Advancement of Medical Research. If it doesn't, scientists claim, the work will move to such research-friendly countries as Israel, Singapore and even China.

No one is more aware of the issues than Katie Zucker. A couple of years ago, she visited Congress with her parents to lobby for stem-cell research, and she plans to help generate support for the initiative. "I have dreams and goals in life," she says, fingering her insulin pump. "What keeps me going is that people are working so hard to find a cure."

—from TIME, May 17, 2004

Questions

1. Why are states making laws on stem-cell research?

2. What is Nancy Reagan's stance on the California stem-cell ballot initiative?