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The following article was selected from the Internet Edition of the Chicago Tribune. To visit the site, point your browser to http://chicagotribune.com/. ----------- Chicago Tribune Article Forwarding---------------- Article forwarded by: ray stramd Return e-mail: [log in to unmask] Article URL: http://www.chicagotribune.com/news/metro/chicago/article/0,2669,ART-47235,FF.html Comments: i'm forwarding this to the list since it is clearer than my ramblings about stem cell potential--and touches on the ethical implications we all need to be aware of as advocates of stem cell research ---Forwarded article---------------- Embryo is picked to try to save sister's life By Peter Gorner Correction published Oct. 3, 2000: In a Page 1 story Monday describing the first use of pre-implantation genetic diagnosis to help a sibling, the incorrect name was given for the patient who received the transplanted cells. Her name is Holly Nash. A corrected version of the story follows. Doctors at the Reproductive Genetics Institute in Chicago are anxiously waiting to see what happens to Holly Nash, 6, who last week underwent a stem cell transplant at the University of Minnesota in hopes of curing her lethal blood disease (the name as published has been corrected here and in subsequent references in this text). The bone marrow stem cells Holly received in a simple transfusion came from the umbilical cord of her baby brother, and Holly's life hinges on the cells giving her a new bloodmaking system. Baby Adam, in turn, owes his existence to the luck of the draw -- he had the immune system that his sister needed. Adam was conceived in Chicago through in-vitro fertilization and was screened for the disease and genetically selected from other healthy embryos to give cells to his sister because the two of them have the same tissue type. That marked the first time pre-implantation diagnosis, which the institute pioneered, has been used in this manner. Increasingly, desperate parents are conceiving children to be donors for sick siblings. But this is the first known example of using genetic testing to select an embryo to serve as a donor. Some ethicists believe the case is the latest, incremental step down "the slippery slope" and warn that genetics technology is being pushed so rapidly that moral issues and the implications for society are not being discussed. Some see the doctors as inching toward conceiving children for body parts. The parents obviously have a different view. Jack and Lisa Nash of Denver simply didn't want their daughter to die. They had come to Chicago because of a program that aims to help parents to not be at the mercy of their genes. "These people wanted a healthy baby, but they also wanted to save the life of their other child. I can't think of a better reason to have a kid," said the institute's Dr. Charles Strom, director of medical genetics at Illinois Masonic Medical Center, with which it formerly was affiliated. "People have children for many reasons -- to work the family farm, to perpetuate the family name, to save a marriage -- but as a pediatrician I can tell you that 50 percent have children for no reason at all. It's an accident. "So if you ask me if I mind that someone is having a baby to save a life, I don't have any problem with that at all." Strom's partner in this work has been institute founder and director Dr. Yury Verlinsky, a Siberian emigre who in a few years has built the business to 12 satellite centers in the U.S. and outposts in Cyprus, Russia, Belarus and Ukraine. Verlinsky began shaking up his field with chorionic villus sampling, performing the first procedure the U.S. in 1983 and one of the first in the world. His innovations have generally found acceptance in the medical community, albeit after some shaky starts. The work at the institute is lawful, privately funded and bound by the canons of medical ethics, and it has become one of the nation's most successful and controversial specialty clinics in reproductive technology. Now, the Reproductive Genetics Institute at 836 W. Wellington Ave., is again pushing the envelope, and making medical history. That worries ethicists. "This case is another application of this technology -- pre-implantation genetic analysis -- that's as troublesome as the others," said Dr. Mary B. Mahowald, professor of obstetrics and gynecology and the MacLean Center for Clinical Medical Ethics at the University of Chicago. In agreement was Dr. Arthur Caplan, of the University of Pennsylvania Center for Bioethics. "As a society, we need to have a discussion very soon about parental choices and reproductive technology," Caplan said. "If we decide to leave it to parents, doctors and to the marketplace, then that's our choice. But ignoring these issues won't make them go away." A tracker of each new step in the genetics revolution is attorney Lori Andrews, director of the Institute of Science, Law and Technology at the Chicago-Kent College of Law, Illinois Institute of Technology. "Creating a second child as a donor for the first is becoming almost routine without sufficient ethical thought," she said. "Over 100 children have been conceived as prospective donors. But these reproductive arrangements create new tensions for families." The disease that is torturing the Nash family is Fanconi anemia, a rare hereditary blood disorder, the recessive genes for which the parents never knew they carried. "Holly would have died before her 7th birthday if she didn't get a bone marrow transplant," Strom said. "The problem is there has to be a sibling donor because these patients don't have an immune system. Graft-versus-host disease will kill them. "The purpose of the cord blood transplant is to give her an immune system, and getting the cells from a matched donor ensures the likelihood that they will persist and not be rejected. It costs the baby nothing. The umbilical cord is normally just thrown away." The matched bone marrow transplant success rate for Fanconi anemia is greater than 90 percent, Strom said. From an unrelated donor, this drops to 30 percent. When parents try to get pregnant naturally in hopes of thwarting the disease, the chance of having an HLA-identical sibling is only 1 in 5. "Parents of Fanconi children are so desperate that they regularly play this lottery, although it's not talked about," Strom said. "They keep getting pregnant, have prenatal diagnosis, and terminate healthy babies just because they're not HLA matches." HLA antigens are on the surface of all nucleated cells. They are the major antigens responsible for tissue recognition and allow the body to determine "self" from "non-self." Each month, the institute doctors perform pre-implantation diagnosis for about 30 families who are carriers of genetic diseases they want to make sure are not passed on. The idea seems to be catching on. About 300 babies have been born worldwide after having been screened before implantation for in-vitro fertilization, 200 of them screened at the institute. Nobody knows how many mistakes have been made, becausemistakes usually are aborted. The institute was sued by a couple whose daughter was born with cystic fibrosis after it pronounced the embryo to be free of the disease. The couple were among the first to be tested at the institute. The technology is better now. So is in-vitro fertilization, originally the last hope for infertile couples, but in recent years also used for genetic engineering. The institute can screen for 23 genetic disorders and the list keeps growing; completion of the Human Genome Project should make it leap exponentially. Female eggs can be checked for a gene that increases the risk of breast cancer as an adult. And sex selection, regardless of whether the parents carry a sex-linked genetic disorder, is becoming increasingly common. The science progresses far faster than any pondering, or legislation, about how far to go. The Nash case will open pre-implantation genetic donations to be used to help siblings fight such killers and cripplers as leukemia, sickle cell anemia and thalassemia, Strom said. But an American scientist is analyzing the gene pool of Iceland so it would be possible to screen for blond, blue-eyed children. Researchers recently isolated the gene for dyslexia and are homing in on mutant genes linked to obesity and alcoholism. Are those valid grounds for destroying embryos that are otherwise healthy? "The parents have mixed motives, which have to be respected," Mahowald said. "And the procedure does provide some people with what they consider a means of eliminating a risk of having a child affected with a specific disorder without the woman having to undergo prenatal diagnosis and possible termination of an affected fetus. It does accomplish that. "But it's really not bypassing abortion, unless abortion is defined as the destruction of the embryo in utero. If you define abortion as termination of an embryo, it's not OK. By definition, the affected embryos, or the healthy but in some way disqualified embryos -- genetically unique, all of them -- have lost their chance. "But really, a better way to increase the odds would be with another technology that seems to be coming soon: human cloning. There you're looking at the finished product." To Art Caplan, one of the nation's leading ethicists, the Nash case is not troubling by itself -- "we're into biologically irrelevant property. Nobody's harmed. This kind of procedure is not like getting bone marrow. We're talking about absolutely no risk to the baby. "But what if it doesn't work? The baby would be the most likely candidate for bone marrow. And repeat transplants are not unknown. Donors normally have a right to say they don't want to go through that again. But if a child is designed for that very purpose, who's looking out for his rights?" And as Strom lists the diseases he sees donors being used for, Caplan sees even more. "When you design children for purposes that are acceptable, where do you draw the line? Blue eyes? A kidney? A testacle? Pre-implantation genetics opens the door to those kinds of questions." He is accusing no one of practicing eugenics. Still, is it right for a doctor and parents to design human embryos? Recounts Andrews: "When a remarried woman learned that a child from her first marriage needed a bone marrow transplant, she used artificial insemination with sperm from her first husband to conceive a child. "But how will her second husband feel about her having another baby with her first husband? Who will raise this child? "For doctors pushing conception as a medical treatment, the psychological impact of their actions -- on the second child and the family as a whole -- are often ignored." Nor does Caplan expect the situation to change. "I've seen no signs of political or legislative leadership to engage in these questions; I don't see hearings, bills proposed -- just a lot of ethical discussion. "We're all so paralyzed because of the abortion battle that we're scared away from even talking about reproductive technologies. It's tough, politically. Dangerous even."