X-Message-Number: 15412 From: "Mark Plus" <> Subject: "Stem Cell Research Advocates in Limbo" Date: Sun, 21 Jan 2001 20:31:15 -0800 From: http://www.nytimes.com/2001/01/20/health/20STEM.html?pagewanted=all January 20, 2001 RESEARCH AND MORALITY Stem Cell Research Advocates in Limbo By SHERYL GAY STOLBERG -------------------------------------------------------------------------------- -------------------------------------------------------------------------------- WASHINGTON, Jan. 19 As the mother of a kindergartner with a severe form of diabetes, Lyn Crozier Langbein says she is trying "to keep the ghosts at bay." The ghosts, in her world, are fears of the complications her daughter, Jamie, may suffer as an adult: heart disease, nerve damage, kidney failure, blindness. Now there is a new ghost on Mrs. Langbein's list: the possibility that embryonic stem cell research, a promising avenue of scientific inquiry that provokes moral objections because it involves the destruction of embryos, may be restricted once George W. Bush takes office as president. "Time is not on our side," said Mrs. Langbein, of Brookeville, Md., noting that the research could take years, or even decades, to help her daughter. "So that would become another nightmare, the idea that this research plug could get pulled." For tens of thousands of Americans with incurable illnesses not only diabetes but also degenerative brain disorders like Alzheimer's, Parkinson's and Huntington's diseases stem cell research offers the tantalizing promise of a cure. Last summer the Clinton administration issued rules that would permit the National Institutes of Health to pay for certain stem cell studies. Now Mr. Bush is considering whether to block the institutes' money before the first experiment gets under way. Opponents of abortion, who say the research is immoral because they believe that life begins at conception, are urging the new president to act quickly. "We have called on the new administration to make absolutely sure that no destructive stem cell research on embryos is done in this country, regardless of the source of funding," said Judie Brown, president of the American Life League in Stafford, Va. "A human embryo is a person at conception, and to destroy willfully one of those people is a deadly act." Mr. Bush has said he opposes federal financing of "experimentation on embryonic stem cells that require live human embryos to be discarded or destroyed." Earlier this week, a Bush spokesman, Scott McClellan, reiterated that statement and said the Clinton policy is under review. But proponents of the research say they have cause for optimism because Gov. Tommy G. Thompson of Wisconsin, who is Mr. Bush's choice to lead the Department of Health and Human Services, has been an enthusiastic supporter of privately financed stem cell research. At his Senate confirmation hearing today, Mr. Thompson drew praise for that support from Senator Tom Harkin, Democrat of Iowa. But the question of federal financing did not come up, and Mr. Thompson did not address it. In recent years, scientists have been able to extract embryonic stem cells from embryos that, typically, have been created by couples undergoing in-vitro fertilization and kept frozen at infertility clinics. Couples may direct the clinics to donate their excess embryos for research, or to keep them frozen indefinitely, or to destroy them. The stem cells hold promise for treating disease. Embryonic stem cells hold promise because they have the potential to grow into any cell in the body. Adult stem cells, which are derived from blood and bone marrow, are also promising, and Mr. Bush supports research in this area. But because embryonic stem cells can proliferate indefinitely and grow into many types of cells, medical experts see them as the building blocks of "regenerative medicine." "These cells have the potential to make any of the kinds of cells that are missing in patients who have what you would call the big, unsolved diseases," said Dr. Doug Melton, chairman of the department of molecular and cell biology at Harvard University. "This is enormously interesting and important." For instance, in diabetes the disease Dr. Melton researches, because his 9-year-old son has it stem cells might be used to produce missing pancreatic cells, called islets, that produce insulin. For diseases that affect the brain, like Parkinson's, Huntington's and Lou Gehrig's disease, stem cells might be used to grow healthy neurons. "This is our hope," said Hal Pilkskaln of Bourne, Mass., whose wife died of Huntington's disease in 1984 and who has two children with the disease. Yet at the same time, Mr. Pilkskaln said, many advocates for patients are reluctant to call too loudly for government-financed stem cell research; they fear that they will be labeled troublemakers, and that private research money will dry up. "Because it has been so politicized," he said, "it makes it difficult to stand up and say, `This is what I want.' " For that reason, advocacy groups are treading gingerly. The Juvenile Diabetes Research Foundation commissioned a poll that, a spokesman said on Wednesday, found that 65 percent of Americans supported federal financing for stem cell research. And Dan Perry, executive director of the Alliance for Aging Research, a nonprofit group in Washington, said a coalition of patients' groups would send a nonconfrontational letter to Mr. Bush asking him to "leave the current situation untouched." "We are trying to keep a low profile on this," Mr. Perry added. Scientists have known of the promise of embryonic stem cells for two decades, through studies on similar cells in mice. But research on human cells did not become possible until 1998, when Dr. James Thomson of the University of Wisconsin became the first to isolate them, using embryos that had been kept frozen at fertility clinics. He has also been able to grow the cells in culture for use by other scientists. His work was financed by a biotechnology company, Geron, of Menlo Park, Calif. The discovery caused a flurry of excitement among patients and researchers, and drew attention from Governor Thompson, who singled out Dr. Thomson for praise in a 1999 speech. But it caused consternation in Washington, where since 1995 Congress has imposed an annual ban on federal financing of research that leads to the destruction of human embryos. In January 1999, the Department of Health and Human Services announced that the ban did not apply to human embryonic stem cells, and said it would issue rules to govern research. Coincidentally, Mrs. Langbein, Jamie's mother, worked at the department as a lawyer at the time, although she was not involved in the stem cell issue. (She left the department last February to tend to her daughter.) The new rules were issued last August; they permit federally financed scientists to experiment with cell lines derived from embryos, so long as those scientists do not extract the cells from embryos themselves. The health institutes are soliciting grant applications; they are due on March 15. Although some scientists thought the new rules did not go far enough, Mrs. Langbein said she was "tremendously pleased." But Ms. Brown and other abortion opponents say the rules defy Congress's intent and violate federal law. "Congress knew how to write such a narrow ban; it chose not to," said Richard Doerflinger, associate director of the Secretariat for Pro-Life Activities for the National Conference of Catholic Bishops. Yet there is support for the research in some unlikely quarters in Congress. Senator Strom Thurmond, Republican of South Carolina, an abortion opponent, has spoken out strongly in favor of stem cell studies. Mr. Thurmond has a daughter with diabetes. Senator Gordon H. Smith, Republican of Oregon, who has a relative with Parkinson's disease, also favors stem cell research. "Part of my pro-life ethic is to make life better for the living," Mr. Smith has said in letters to constituents. The stem cell controversy has echoes of a similar dispute, over fetal tissue research, that arose when Mr. Bush's father assumed the presidency. At that time, in 1989, abortion opponents urged President George Bush to extend a ban on federally financed fetal tissue research. He did, but the ban was lifted by President Clinton, and Congress has since enacted legislation permitting the studies. As the debate over stem cell research continues, there has been an explosion in private research among scientists like Dr. Melton, of Harvard. That troubles some medical ethicists, who say that without federal financing, there is no federal regulation, leaving a field heavy with ethical implications to profit-making entrepreneurs. Dr. Melton, meanwhile, says unless the National Institutes of Health can pay for the research, the field will not progress. "Great advances are made when they give grants to large numbers of people who have new ideas," he said. "And so it would be a mistake if everyone counted on a few of us." In the meantime, patients and their families are watching and waiting. To them, the transition of power in Washington, an event from which many Americans feel removed, is a deeply personal matter. "We're not talking about your livelihood or your job or how the traffic flows," said Judy Culpepper, whose husband, Brett, recently underwent a fetal tissue transplant for his Parkinson's disease. "We are talking about affecting your ability to survive." _________________________________________________________________ Get your FREE download of MSN Explorer at http://explorer.msn.com Rate This Message: http://www.cryonet.org/cgi-bin/rate.cgi?msg=15412