God and Science

By Arthur Allen
Sunday, October 15, 2000; Page W08


 
 

Sam, Doug and Emma Melton at home.  (David Binder - for The Washington Post)

Biologist Doug Melton's singular ambition was born on the night of November 4, 1991, when he and his wife, Gail, drove their 6-month-old son, Sam, to Children's Hospital in Boston. The baby had been listless and sick with a cold, and now he was vomiting and wouldn't nurse. It was a night they would never forget.

Sam lay pale, limp and semiconscious on a small metal table surrounded by panicked adults in hospital smocks. At some point a doctor said she didn't think Sam would make it. The parents were asked to leave the ER staff and their son alone to struggle with his fate.

And then Sam let out a small stream of hope. That is to say, Sam peed. A nurse noticed that his pee was very sweet, and then the doctors understood: Sam was a diabetic, the youngest ever diagnosed at Boston Children's.

"You don't remember any of that, do you?" Doug asks his son.

Sam, an elfin, brown-haired 9-year-old, shakes his head no. He's wearing a big, glazed smile, sitting next to his father at a dining room table in their graceful old green-shuttered house. His attention is drawn to a big plate of cookies in the middle of the table.

Doug, 47, trim, bespectacled, bushy-browed, removes a plastic diabetes test kit from a small zippered bag. A pinprick on Sam's calloused finger draws a tiny drop of blood. With a seasoned air Sam ferries the droplet to a sensor and gets an electronic readout of his glucose level. 97. Normal.

"Okay, but just one bite," says his father.

Taking care of Sam has meant administering five to eight blood tests a day, and up to five insulin injections, and closely calibrating his intake of food and drink against his level of activity. Gail has done most of the watching. There have been nights when Sam had a stomach bug and Gail set an alarm to go off every half-hour so she could get up to squirt drops of glucose into his mouth.

Especially in the early years, "Gail was his pancreas," says her husband. And she was happy to do it, she says, "if that's what it took to have a healthy and contented child."

The day when Gail can no longer monitor Sam's intake of sugars, can no longer be his pancreas, is sort of awful to dwell on, and the Meltons don't. Because by the time Sam is old enough to begin suffering the worst complications of diabetes, they hope and trust that science will have come up with something-that Doug will have invented something-to replace Gail. Doug Melton is a top-flight biologist who built his career deciphering the mysteries of frog development. But he's mainly concerned with one question now: "How do you make a human pancreas?"

To make this pancreas, to grow insulin-producing pancreatic cells that will enable his son to process sugars normally, Melton intends to start virtually from scratch, with the cells contained in the human embryo when it is less than two weeks old. After dividing and transforming themselves millions of times, these cells give rise to all the multiplicity of working parts that make up a human being-a heart, a brain, a foot, a pancreas.

These first cells are known as human embryonic stem cells, and in 1998, scientists, using technology developed by specialists at in vitro fertilization clinics, managed to isolate them and keep them growing in a petri dish. That opened up a whole new world of breathtaking possibilities for science and medicine. But it also opened up a world of complications. Because embryonic stem cells come from embryos. And to obtain those embryonic cells, you end the embryo's potential to become a person. In other words, you kill it.

It's not how Doug Melton sees the issue, but others do. And so Doug's work, and Sam's prospects, have become bound up in an emotional national debate about when, exactly, life begins-and who should control it-in an era when science can almost make it from scratch.

Bearded, balding, compact and grave, Richard Doerflinger is one of those who believe that embryos are living humans and that harvesting their cells amounts to killing a person. Doerflinger works for the Roman Catholic Church, as an analyst and sometime lobbyist. He speaks well, at times kindly, at times acerbicly, which makes him a frequent participant at conferences and panels where the future of embryonic stem cell research is discussed.

On a recent evening, as he returned home from a Dartmouth College conference, Doerflinger slumped wearily in the back of an airport cab after a day doing battle with bioethicists.

Bioethics is a profession that has arisen during the past three decades of high-tech science and medicine to help doctors, researchers and the rest of us weigh the social good and evil resulting from techniques that allow us to keep alive one-pound preem-ies, conceive babies with the sperm of the dead, clone sheep and, maybe one day, humans, too.

Most bioethicists believe that embryonic stem cell research, on balance, is good, offering promises of treatments for disease or other medical advances. But Doerflinger thinks that the bioethicists are simply greasing the wheels of science with elegantly inhumane arguments. "It's a basic tenet of all ethically grounded medical research that you don't harm or kill one human being in order to benefit another," he says. "The embryology textbooks say this embryo is a human being. People can make theories about which human beings are important and which are unimportant, but that way madness lies."

For the last 11 years Doerflinger has kept tabs on medicine's ethical frontier, and sometimes fought fiercely to hold it in check, as an official in the Pro-Life Activities Secretariat of the National Catholic Bishops Conference in Washington. While most lay bioethicists struggle with a mixture of principles and empirical reality, Doerflinger hews to the belief of the church.

As such, he's accustomed to being judged as a slightly odious member of the stem cell debating society, something like the wedding guest who stands up to challenge the marriage. The role seems to fit Doerflinger's somewhat saturnine personality. Testifying before Sen. Arlen Specter's Appropriations subcommittee last year, he made the senator wince by pointing out that embryonic research, which Specter favors, is illegal in Pennsylvania, his home state.

At Dartmouth, Doerflinger had criticized the man who invited him to the conference, bioethicist Ronald Green, saying that one of Green's papers-which dealt with the assignation of moral value to persons in different phases of life-"scares me."

Doerflinger and his allies in the church and in Congress see embryonic stem cell research as the freshest trench in the reproduction wars, which the church always seems to lose, but never entirely. It has always opposed contraception and extramarital sex and abortion and in vitro fertilization, despite the prevalence of those things. However you feel about the church's positions, they are consistent-without abortion, there could be no fetal tissue research. Without IVF, there would be no leftover frozen embryos, hence no stem cell research.

"What I think the embryo research debate has done is vindicate a lot of the problems we raised with IVF generally 20 years ago-that it was going to make human beings by lab procedures divorced from the loving physical union of husband and wife," Doerflinger says. "That people would view the embryo as a commodity, that they would do quality control, that they would view human life cavalierly."

Like Melton, Doerflinger, who is 47, brings his own personal meaning to the debate. He grew up in a Catholic blue-collar family on Long Island; his father was a linotypist, his mother a nanny. He was a serious boy to begin with, but at age 13 a family tragedy thrust Doerflinger into the heart of the bioethics debate.

Richard's brother, Eugene, away at college, was in a terrible car wreck that left him in a coma. Doctors predicted he would never emerge, but a few months later, while lying in bed at home one afternoon, Eugene regained consciousness as his mother vacuumed the floor in his room.

"He ended up with lasting disabilities, some of which were due to the fact that doctors had given up on him. They didn't bother to reset his dislocated shoulder. They let his muscles atrophy. And I guess that instilled in me the idea that we should not give up on a human life too readily. It also made me less uncritical of doctors. It gave me a healthy skepticism about experts."

Later, at the University of Chicago, Doerflinger started out premed but ended up with degrees in philosophy and divinity, drawn by his own religious curiosity as much as his family's experience. He has worked for the bishops since 1980. His brother lives in a nursing home not far from where Doerflinger, his wife and four children live in Silver Spring. On Sundays, Richard pushes Eugene to church in a wheelchair.

At times, Doerflinger says, he is struck by how far the dominant culture has strayed from his own values. He recently has read a magazine story in which the writer, a woman with two sons and a hankering for a daughter, considers resorting to a sex-selection technology on sale at an IVF clinic in Fairfax County. "This obsession with control amazes me. How can anyone with children believe you can control what they become?"

"In our creed," says Doerflinger from the darkness of the cab hurtling down I-95 toward home, "we say the Son is begotten, not made. That means that the act of sex is an act of love that opens the possibility of another human being arising. It is not an act of domination over that new being. It is a freeing up for the possibility of someone new who you don't control or dominate coming into the world."

And so, Doerflinger sees this moment as a singularly important one, and not just because of the question it poses-a question seemingly borrowed from the abortion debate-about when life truly begins. For if scientists can transform a potential life into a pancreas for Sam Melton, if scientists can create immortal cell lines and use them, as stem cell advocates believe, to cure Parkinson's and Alzheimer's and the other mortal afflictions of man, then where does that leave God?

It is partly this emotional question that underlies the debate over embryonic stem cell research. On one side are scientists like Doug Melton, their patients and their lobbyists, who believe it would be nearly criminal not to take advantage of the enormous medical potential of these basic human building blocks to cure diabetes, Lou Gehrig's disease and many other illnesses.

On the other side are people, like Richard Doerflinger and Sen. Sam Brownback (R-Kan.), who believe no misfortune in a human life validates the willful destruction of another human life, no matter how potential. Even when that life, stored in a tube in a freezer full of liquid nitrogen, is no bigger than the period at the end of this sentence and is slated for disposal in a medical waste bin.

By early next year, if Congress or the new president does not intervene, the National Institutes of Health will begin tightly controlled funding of research that will use human embryonic stem cells derived from some of the 100,000 or more embryos currently frozen at fertility clinics around the country. These are embryos abandoned or donated by couples who succeeded in using IVF technology to get a child, or gave up trying.

Scientists and patient groups, mindful of the large amounts of time and money that lie between stem cells' current promise and their eventual clinical usefulness, have been impatient for NIH money and oversight to start flowing. Doug Melton hopes to be one of the first into the NIH stream. For much of this year, NIH and congressional opponents of the research did little but feint and weave. Opponents of the research weren't strong enough to force a vote against funding, in part because some strong antiabortion members of Congress made a distinction between embryos and fetuses; the Clinton administration, surprised by the heat of the opposition, seemed reticent about forcing a vote on the issue. Nonetheless, on August 23, NIH went ahead and published its final guidelines establishing how it would fund stem cell research, opening the way for NIH grants to flow. But opponents have promised to fight the guidelines next year, if not in Congress, then in the courts.

Far from simply reanimating the old-but-still-bitterly-debated questions about when life begins, the potential use of these cells has raised some new, more complex ones.

For example, frozen embryos seem infinitely less human than fetuses legally aborted every day. But the decision to abort those fetuses has come to be seen by most Americans and the courts as a pregnant woman's right. For those who think that an embryo is a life, however, stem cell research offers no justification for killing it other than research whose benefit is no more certain than the embryo's humanity.

On the one hand, to use an embryo for potentially life-saving research rather than simply throw it away could be viewed as the more ethical choice. But opponents say it's wrong to preclude a human life (however doomed it seems) that isn't messing with anyone else's.

Finally, there is the complicating fact that Congress, whether or not it funds embryonic stem cell research, does not intend to ban it. That means that privately funded scientists can jump right into the research behind closed doors, with no public scrutiny. In fact they already have. Two companies-Geron Corp. in California and Advanced Cell Technologies in Massachusetts-already are trying to clone human embryos in order to harvest their stem cells for medical purposes.

Because the issues raised by stem cell research are trickier than the ones posed by abortion, the political lines are murkier. Some congressional foes of abortion support stem cell research. Sen. Strom Thurmond (R-S.C.), whose daughter is a diabetic, has always opposed abortion but testified in favor of the NIH research plan. Others who have backed research on fetal tissue-such as Sen. John McCain (R-Ariz.)-oppose embryonic cell research. Even people who lack the church's structured belief in the sanctity of all human life forms can be uneasy about the shifting boundaries of bioethics.

When Dolly the sheep was cloned in 1997, two of three bioethicists called to testify in the Senate said human cloning could be justified. But the public reaction was strongly opposed. Cloning might not hurt anyone in particular, most of us agreed, but it somehow would damage us all. It felt instinctively wrong to create a genetically identical human being.

This uncomfortable gut reaction-bioethicists call it "the yuck factor"-is an intuitive understanding that human life can't be infinitely tinkered with without destroying something basic to humanity. Leon Kass, a University of Chicago philosopher who sides with Doerflinger in many of these debates, calls it the "wisdom of repugnance." It is, sadly for Kass, Doerflinger and the church, a wisdom that isn't infinite. Both fought IVF bitterly on "yuck factor" grounds three decades ago. Today there are tens of thousands of families with children born as a result of the procedure.

Still, opponents of embryonic stem cell research have another argument: that the destruction of embryos is downright unnecessary. Increasingly, research is revealing the plasticity of a variety of more specialized and developed but equally useful stem cells, obtained not from embryos but from fetuses or even adults. In a growing number of experiments in laboratory glassware and rodents, these specialized stem cells have been prodded into transforming themselves-from brain stem cells, for example, to teeth or skin or blood or muscle cells.

But the consensus among scientists is that getting cells to change course like that-in numbers large enough to make a difference-will be a lot harder than using the blank slate of embryonic stem cells. At this very early point, few scientists want to close off any avenue of research. And because this is true, the power of the scientific and patient groups that favor embryonic stem cell research has been growing.

In 1996, when Rep. Nita Lowey (D-N.Y.) attempted to change an appropriations bill to allow embryonic research, the amendment lost, 256 to 167, with opposition coming from abortion foes as well as liberals leery of medical experimentation. But most of the action in the current Congress has been pro-embryonic stem cell research. Specter held at least seven hearings at which scientists, patients and other proponents of the research, including Doug Melton, spoke in favor. Doerflinger was at one of the hearings, too, testifying with the opponents. Senate Majority Leader Trent Lott (R-Miss.), who opposes embryonic research, promised to schedule a vote on Specter's pro-research bill, but hadn't as of this writing. Apparently, the votes weren't there to guarantee its defeat. "New lobbying forces," says Doerflinger dryly, "have been brought into play."

The atmosphere has changed since the fetal tissue debates of the late 1980s and early 1990s. As a result of Dolly and the Human Genome Project and the Internet-era sense of vast scientific wizardry, the ground has shifted. In a year when funding for NIH research is going up dramatically, members of Congress who might be inclined to oppose embryonic research risk being seen as opponents of medical progress-of wanting to close off an avenue of research and thereby condemning people who could be cured.

"There are ethical concerns in not proceeding with this research," Larry Goldstein of the American Society for Cell Biology told Specter's subcommittee last spring. Nodding to fellow testifier Christopher Reeve, the actor paralyzed in a 1995 horseback riding accident, Goldstein added: "What happens if in five years we find that adult stem cells don't work? What do we tell people like Christopher Reeve? That we're sorry? They may not have another chance."

Of course, even if that is true, the Roman Catholic Church does not flinch. "We don't deny that you can find out interesting things and perhaps develop therapies using embryonic stem cells," says Doerflinger, who testified before Specter last year but wasn't invited back. "We just think it's wrong."
 
 

Pioneer John Gearhart at Johns Hopkins.  (Chris Hartlove - for The Washington Post)

For all the emotion it has spawned, the stem cell issue has only been with us really since November 1998, when two teams of scientists, one at the University of Wisconsin, the other at Johns Hopkins University, announced they had cultured human cells that might have the power to become any cell or tissue in the body.

The stem cells derived by John Gearhart's group at Johns Hopkins actually came not from embryos, but from the primitive sex organs of aborted Baltimore fetuses. The fetuses were about two months old and resembled shrimp. The Wisconsin group grew its stem cells from 14 embryos donated anonymously by patients who had undergone fertility treatments at the University of Wisconsin Hospital in Madison.

The cells grown in the two labs were not exactly like any cells growing inside us. In the body, the inner cell mass of the embryo is an emerging life, a ballerina folded into herself before she begins to leap and pirouette. The cells these scientists extracted seem to replicate forever without fundamentally changing-as long as they are fed the proper mix of chemicals.

After more than a year, in which his original cells divided more than 300 times, Wisconsin researcher James Thomson finally froze the original batches "because we were tired of working on weekends." Before they were frozen, he had noticed that if the stem cells' diet was altered, or the colonies grew too dense, they spontaneously began to differentiate-into blood cells, pulsating cardiac muscle, spiky neurons. It would clearly take a lot of work to understand and control those changes, let alone to make a pancreas. But the potential was enormous.

To scientists, they are "immortalized" cells, because they have the potential to become any kind of cell. They could also be used to create a powerful new biological tool-a template for testing new drugs and toxins and studying the biochemical pathways of the healthy and the sick. The cells might provide an alternative to some animal testing. And most importantly, someday, they could be used to build tissues that would regenerate Parkinsonian brains and rotting livers and decaying hips.

"It had always been thought that the stages of an organism were linear-once you leave one phase, it's gone forever. That once you have the misfortune of suffering a stroke, or a brain disease, you're in the wrong phase, it's too bad," says Harvard neurobiologist Evan Snyder. "It turns out that development is going on throughout your life. The stem cells don't disappear. You can pull them out, put them in a dish, grow them, put them back. Maybe there will be situations where we don't need to do organ transplants. We can rebuild organs from scratch, so to speak, with cells in a dish."

Within weeks of publishing their data, Thomson and Gearhart were swept up in a frenzied debate. To get to his laboratory, Gearhart, an earnest Midwesterner, sometimes had to pass hostile antiabortion protesters. At one point he and his 11-year-old daughter were driving down the street near his office and she turned to him with a shocked look. "My name is on those signs," Gearhart recalls her saying. Somebody was holding up a banner that read, "Gearhart and Johns Hopkins, Nazi Partners in Eugenic Experimentation."

While Thomson and Gearhart went forward in their work with funding from Geron Corp., the federal government proceeded cautiously. In 1996, back when few people knew anything about the potential of embryonic stem cells, Rep. Jay Dickey (R-Ark.), with Doerflinger's assistance, had successfully introduced an amendment to an appropriations bill prohibiting the NIH from funding scientific work "in which human embryos are damaged or destroyed."

But Thomson and Gearhart had changed the picture, and NIH, which opposed the Dickey amendment from the beginning and now saw an opportunity for major research advances, decided, essentially, to do an end run around the restriction. It got a legal opinion from the Department of Health and Human Services stating that while the amendment prohibited NIH from funding research that created or destroyed human embryos, NIH could fund research on cells from embryos that had been destroyed by someone else. The ruling formed the basis of the guidelines published August 23 for embryonic stem cell research. To make sure in vitro fertilization patients weren't pressured into donating embryos, the guidelines stated that the fertility specialist who harvested the embryo couldn't be the same person who destroyed it to remove its cells. The parents of embryo had to give informed consent, and the embryo had to be treated "respectfully."

But if NIH was trying to tread gingerly on the feelings of those who opposed the destruction of embryos, it failed spectacularly. Of the more than 50,000 people who responded to NIH's call for comment on last December's draft of the guidelines, more than three-quarters opposed them. Many of them called the NIH scientists baby killers and Nazi doctors. "The people who want to dissect a human embryo are the same people who want to pull a baby out of the mother's womb feet first and puncture the head and suck the brains out," says Dickey. "There's no difference in the two philosophies."

Doerflinger, writing on behalf of the bishops conference, asked acidly how it was possible to treat an embryo with respect while killing it, and how could you get informed consent from the people who agreed to have it killed. As for the NIH's end run around Dickey, Doerflinger says "it's like saying you won't pay to have someone kill me, but will experiment on my heart right after watching someone else rip it out of my body. Either way I'm dead . . ."

Among the patients who wrote in to oppose the guidelines was Chris Currie, a 37-year-old diabetic who, like Sam Melton, could benefit dramatically from stem cell research. But, he said, he would reject any cure or treatment that came from embryos. "I'm the one who has to think, `What might this embryo have grown up to be? Would it have been someone who laughed and loved, married and had kids-all the things I've done? . . . How does God see this? What judgment will be laid upon me if I do this?' You can't so easily punt on those questions when you're the one who's directly benefiting."

The emotion and venom startled NIH, although it had been down this road before. Since 1993, it had funded research using cells from aborted fetuses and faced intermittent attacks from abortion opponents. But fetal tissue was a different issue. The fetuses used in the work of about 300 NIH-funded researchers across the country, many of them brain scientists, had been aborted by women freely; NIH and these researchers had nothing to do with that choice.

But human embryos? Until about 20 years ago they existed only inside a woman's reproductive system. Technology made it possible to grow them in petri dishes, and today 330 fertility clinics in the United States do so. Typically they retrieve and fertilize 15 eggs from each woman who comes to them for treatment, but usually implant fewer than a third of those fertilized eggs. The remaining embryos die or are destroyed, or are donated, or put in storage. Fertility experts say at least 100,000 of these eggs are in storage in America.

An embryo put in deep freeze consists of about 100 cells, and each of these cells contains all the information needed to start a unique genetic existence. Each embryo is a potential life-very potential, but much more than abstract. Yet it's hard to work up empathy for these frigid particles, smaller than the tiniest hailstone. They are human, but are they humans? At the other end of the spectrum, brown-eyed Sam Melton, his blood sugar rising and falling with dizzying irregularity, is not in the least bit abstract. He's altogether more personable than the embryos. So are the 1.5 million individual Parkinson's patients who might gain from stem cell research, the 300,000 burn victims and potentially millions of others.

After testifying before Specter's subcommittee in January 1999, Doug Melton sat back and watched the whole debate with a mixture of impatience and disgust. To him, embryonic stem cell research carried a moral imperative that went beyond his family's experience. He saw no substantial excuse not to begin.

"In a few years they may be able to make embryos from blood cells. Does that make blood donation an abortion? Is masturbating half an abortion? I'm not a zealous nut who's sure this is the only way to cure the disease, but like all parents of diabetic children, I think it's our nation's obligation to use the enormous resources we have to pursue ways of making lives better."

From the beginning NIH intended to push forward. "You'll notice we invited comments on the guidelines-we didn't invite comments on whether we would fund the research," says Lana Skirboll, director of science policy at NIH. Still, "the length of time this has taken is a reflection of the care we've given the issue."

But Melton had begun to conclude that NIH, long the chief supporter and funder of biomedical research in the United States, wasn't going to move fast enough on this front for him. The politics and the bureaucratic necessities were bogging things down, and who knew for how long. Meanwhile, the private sector was moving in on NIH's turf. With the Human Genome Project to map out the human genetic code, private companies were ready and eager to compete with the federal government and pay for exotic research that held out the promise of lucrative new drugs and therapies. Stem cell research was a hot new arena for biotech companies. And so, while much of the scientific community was waiting to see whether the NIH would fund embryonic stem cell research, Doug Melton was making other calculations.

On a Thursday morning in spring, Melton is standing in the auditorium on the secluded campus of the Howard Hughes Medical Institute in Chevy Chase, preparing to address 40 people who have nothing to do with the federal government but have lots of money to devote to cutting-edge medical research.

Everything about the institute bespeaks power and wealth: The rooms are high-ceilinged, almost cathedral-like; the furniture hand-crafted wood, very expensive; the carpets are deep and soothing; the glassed-in courtyard crawling with feathery vines and potted palms. In the institute's foyer is a life-size oil painting of Howard Hughes, the reclusive billionaire who created the institute, in his pilot's suit.

Melton is no stranger here. In addition to being chairman of Harvard's department of molecular and cellular biology, Melton since 1994 has been one of the 300 top U.S. biomedical researchers on whom the Hughes Institute lavishes ample, opened-ended funding, allowing Melton to devote his life to the single-minded pursuit of the pancreatic beta cell. Once a year, Hughes asks its fundees to come to Chevy Chase and explain their research, their plans. To fulfill that request Doug Melton has flown in from Boston.

As an introduction to Melton's talk, Thomas Cech, a Nobel laureate and the director at Hughes, makes a slight joke. He says that the first time he met Doug he thought to himself, "He's too nice to be at Harvard." Everyone laughs. Melton does seem awfully gentle and plain-spoken as he lays out his plan of attack on the pancreas-making problem.

So far, he tells the group, he has been able to direct the creation of generic pancreatic cells from the embryonic stem cells of mice. But he has been unable to get the specialized pancreatic cells that make insulin. After such cells are created, the next logical step would be to devise a way to transplant the cells into diabetic mice without generating an adverse immune-system reaction. There are many steps ahead, many challenges, and that's why, Melton says, he wants to take the next step, and start using human cells-embryonic stem cells, to be precise.

"I used to hold the view that we should wait until we cured diabetes in the mouse," he concludes. "But I guess I changed my view because I'm getting older and life is short."

The questions from this audience, which includes some top scientists as well as administrators and clerical staff, are polite and to the point. Technical issues are raised. Questions asked about the origins of diabetes and its sharp increase in the United States in recent years. This is not a religious crowd, or a politics-saddled NIH review committee. This is a group that supports Melton's research and understands that, as much as it may sound like pie-in-the-sky material to the lay person, most scientists believe it is likely that someday Melton will succeed.

As Andrew McMahon, a British scientist at Harvard who does similar work with kidneys, puts it: "It's not only reasonable, it's inevitable that this problem will be solved."

In fact, scientists are beginning to use stem cells to cure diseases. Osiris Pharmaceuticals in Baltimore has begun clinical trials using connective tissue stem cells to rebuild human muscle. Scientists in Colorado have had some success using stem cells from aborted human fetuses to treat Parkinson's.

The key part of Melton's visit to Hughes comes after his talk, over lunch at the institute cafeteria with Cech and James Gavin, a diabetes expert. Melton is hoping that the Hughes Institute, born of Hughes's anti-government paranoia, can help him bypass the government's reluctance to fund controversial research. The symbolism is not lost on him.

The three men talk about NIH's stem cell dilemma and about other difficulties that the lobbying against this research is causing. The Hughes Institute would like to help him obtain the stem cells and understands the issues involved. "An agency like NIH is vulnerable to political tides and under obligation to try and reflect some sense of a national consensus on an issue of this type," says Gavin. "It will always be in a somewhat tenuous position with respect to an issue like stem cells. It's not that the private sector feels no obligation to consider ethical issues. But what the private sector can do is come to a decision after due diligence, and proceed with a sense of its own mission."

That said, the institute can't help Melton out of his current quandary. At present, the sole American source of embryonic stem cells is the University of Wisconsin, which has set up a corporation that offers academic researchers access to James Thomson's cells. More than 100 researchers have expressed interest in the cells-they cost $5,000 up front for a starter kit. But the contract sent to Melton for use of the cells comes with two unusual clauses. One states that Geron Corp., which funded the research on stem cells at both Wisconsin and Johns Hopkins, holds the rights to any discovery arising from work with Thomson's cells; the other, a generic bailout clause, says that the university's foundation can at any time order Melton within 90 days to destroy the stem cells and any experiments he's done with them.

Harvard won't go along with these terms. Neither, it turns out, will the Hughes Institute. Melton leaves Hughes feeling disappointed. As he heads back toward his son and his lab in Boston he examines his other, limited, options. Melton knows that a group in Australia has created its own immortal embryonic stem cell lines. British and Israeli researchers are also trying to develop the cells. Given that Congress and NIH are not moving ahead swiftly on the issue, that could leave Melton with what he calls "the extreme possibility." By which he means he would take his family and, in the name of science and his diabetic son, "move out of the country."

The Clinton administration has tried to create a consensus on stem cell research, but it seems to have changed few minds. Beginning early last year, the 18-member National Bioethics Advisory Commission (NBAC) held 10 stem cell meetings around the country and compiled 3,000 pages of testimony from clerics and philosophers, scientists and doctors, lawyers and sociologists. A committee of the American Association for the Advancement of Science pondered stem cells at length, as did an NIH advisory board.

None of the stem cell panels contained a single member strongly opposed to embryo research, so to critics, their decisions seemed to be foregone. "The basic function of these panels seems to be to articulate reasons for what the people who appointed them already wanted to do," Richard Doerflinger said not long after NBAC issued its report saying stem cell research should go forward.

And so the battle shifted to Congress, where legislation both to allow and to prohibit federally funded stem cell work has been introduced. About 90 patient groups that wanted embryonic stem cell research to go forward joined last spring to create CURE-the Coalition for Urgent Research, which enlisted scientists and high-profile patients like Christopher Reeve and Parkinson's sufferer Michael J. Fox to argue their case. In response, a smaller collection of clergy and doctors opposed to embryonic stem cell research formed Do No Harm.

The names-CURE vs. Do No Harm-provide a catchy, but caricatured summation of the conflict. It is surely hype to claim that stem cells will bring cures, because no one can, with certainty, predict the outcome of such basic research. And the effort to block stem cell research at times appears to be a straw man for the abortion debate. But the two names do reflect a more basic cultural difference-between an interventionist, technical approach and an inevitably fatalistic, religious worldview.

In the Senate, Arlen Specter and Tom Harkin (D-Iowa) have introduced legislation that would allow NIH-backed scientists not only to use embryonic stem cells, but to derive them from IVF embryos. In the House, Carolyn Maloney (D-N.Y.) and Constance Morella (R-Md.) have introduced a resolution supporting the NIH guidelines and are using it to muster resistance to a new Dickey-led push to legislate an outright ban on embryonic research. After doing head counts on the bill, the House leadership apparently has decided not to allow Dickey or anyone else to add anti-stem-cell-research language to the appropriations bill that provides funding for NIH.

"There seems to be a gentleman's agreement that [the appropriations bills] won't be touched," a frustrated Doerflinger said after hearing of the decision this summer. Now, everything rests on the election. Republican presidential nominee George W. Bush opposes the NIH guidelines and could override them if elected. Even if Democratic nominee Al Gore becomes president, Republicans could try a legislative attack on the research-but it's unlikely they'll have the votes, opponents acknowledge.

On the sidelines, many cell biologists have come to hope that Congress will do nothing. They believe that if NIH research were to get started and produce some therapeutic successes, social fears would abate, as they did years ago over organ transplants. "Transplantation is a taboo in our society until it works," says Ronald McKay, a leading NIH stem cell researcher.

McKay, whose Scottish origins are evident in his brogue, doesn't scoff at the public's queasiness about stem cell research. After appearing recently on a BBC program about stem cells with Doerflinger, McKay asked a few relatives back in London what they thought of it. They told him his work sounded "spooky"-the "yuck factor" at work.

"The Catholic position is probably closer to that of the public than ours," McKay concedes. "I have colleagues who say that with some easy genetic engineering we could make humans without a forebrain. And grow that. For harvesting organs. I find that spooky. And yet these colleagues say, `Ron, what's the problem? That wouldn't be a person.' "

McKay, for his part, wishes that NIH had forced the stem cell issue instead of issuing guidelines that tried, and failed, to please everyone. He believes, as do Specter and Harkin, that federally funded scientists should be permitted to derive stem cells from embryos, as well as use them. Limiting the work done in the public arena, McKay believes, will simply drive it into private firms that are under no obligation to release information about their experiments.

"America spends $15 billion a year on biomedical research," McKay says, looking out his fifth-floor window over a growing thicket of buildings on the NIH campus. "It's one of the greatest things about America. If you put basic data in private hands, you're going to change the nature of biology, and of life."

As it is, some scientists won't be seeking NIH funding even if Congress doesn't intervene to shut down the research. The NIH guidelines are too narrow and restrictive, they say, too politically correct and logistically impractical. They'd rather go to the private sector. Johns Hopkins's John Gearhart, already funded by Geron Corp., says patient groups are lining up to support his research with private money. "They're all interested. Millions of people could benefit from this," he says.

Geron Corp., which created a minor scandal by successfully filing a patent in Europe for human cloning and also controls the patents in the United States for genes that apparently enable cells to divide forever, is one of a handful of companies moving ahead with stem cell efforts. When Thomas Okarma, the company's chief scientist, gave a talk at an AAAS meeting this spring, many scientists could be seen madly scribbling notes.

"This is exactly why we need public-funded research," says a senior NIH official, who asked not to be named. "None of what he's talking about has been published." And that, the official says, can hurt both science and the public.

One chilly evening, McKay walks into a Chevy Chase condominium where 26 gray-haired people, most of them in their fifties, are waiting for him to address their Parkinson's support group. Parkinson's patients lack dopamine-producing neurons, a type of brain cell involved in movement, among other things. Parkinson's is a progressive disease, and many of those here tonight are early Parkinson's patients-they've got symptoms like shaking hands and depression and fatigue and disrupted sleep. But they're baby boomers, a generation accustomed to getting what it wants, and they aren't too sick to be squeaky wheels. Research on Parkinson's is well funded, and it has reached the stage where new effective therapies might be available in five years.

"We're near," says Perry Cohen, a health policy consultant who has Parkinson's and helped organize the support group. "Parkinson's has a good chance of getting a product out the door."

As the evening goes on and their medication wears off, some people begin to tremble. Others don't seem to move at all. McKay searches for the simple terms to explain what he's doing, what he can realistically offer these people whose suffering is, after all, what allows him to do his research. "It's like we can grow these cells in our garden," he says. "You don't have to have Parkinson's to think that's pretty cool. But if you do have Parkinson's, it's quite interesting. We can make unlimited numbers of the cells that you're missing."

Rusty Glazer, a fit-looking 56-year-old who retired from the General Accounting Office this year because stiffness and gastrointestinal problems were bothering him at work, is weighing his own thoughts about stem cell transplants out loud. "Do you have any ethical issues with working with these cells?" he asks.

"Of course," McKay says. He clasps his hands and tips his head down in thought. "Look at it this way-I'm interested in how the brain works. And if that was my only motivation, maybe that wouldn't be enough of a reason to work with these cells. There are ethical questions. But there is brain disease, isn't there? So there are competing ethical questions here."

And around the room, a lot of people nod in agreement.

Richard Doerflinger, of course, does not agree. For him, the ethical imperative is to find alternatives to embryo research. So now he is hunkering down to convince Congress that adult stem cells are the right way to go. He is waiting to see what happens in the presidential election. And he recognizes that eventually this might have to end up in the courts.

"The lawyers I've asked are still scratching their heads about who has standing to sue," Doerflinger says. "The embryo can't. Members of Congress can't." But Doerflinger is determined to find someone who can.

For Doug Melton, back home in suburban Boston, the ethics of the matter come down to a little boy who, as we talk, has been dribbling a ball around the parlor and suddenly returns to the dining room and crawls into his mother's arms. "I need a cookie, Mom. I'm low," he says, meaning that his blood sugar has suddenly dropped, which can happen throughout the day with diabetics.

"I'm low, too," sister Emma says. "Can I have another cookie?" Everyone laughs.

Just to be sure, though, Gail does another pinprick test on Sam. And damned if the boy isn't telling the truth. During a half-hour conversation his blood sugar has plunged from 97 to 41-there's too much insulin and not enough glucose circulating in his blood.

"He's getting an insulin reaction," Gail says and sends Emma off quickly to get Sam's glucose tablets. "Did you play a lot of soccer today?" she asks her son. Sam nods and then sits very still.

Gail strokes her son's forehead. Everyone holds his or her breath for a moment. "That's about 20 points away from a coma," Doug Melton says quietly. "If we had done nothing . . ."

The next day Melton is back in his lab at Harvard. A co-worker brings him a slide with cells she cultured from a 15-day-old mouse fetus. Under the microscope lies an archipelago of insulin-producing pancreatic beta cells, just what they've been trying to create. To be sure, these cells come from a rodent, and many steps lie ahead. But there's something about the view under theslide that's energizing.

The cells are stained deep blue. Somehow it seems a hopeful color.