Toys, books, cookies, umbilical cord blood. Siblings are taught to share at a young age. In the case of Adam Nash, this included bone marrow and umbilical cord blood, given to save the life of his sister Molly, who has Fanconi anemia , a rare blood disease. His giving began the day he was born, Aug. 29, 2001, 20 days after the Bush Administration restricted federal funding on human embryonic stem cell research. Embryonic stem cell research, which insured the Nash family that Adam would be a healthy, genetic match and a donor for Molly, saw an ease in funding restrictions Tuesday, when the National Institute of Health announced federal funds may be used to work with already existing human embryonic stem cell lines. About 700 cell lines exist worldwide. The NIHâÄôs guidelines follow President ObamaâÄôs original lift of the Bush AdministrationâÄôs research restrictions in March. The stipulations of the new guidelines say creation of new embryonic stem cell lines cannot be federally funded. A cell line must be derived through private or corporate funding, or in other countries. But after this first step further research can be federally funded, said Dan Kaufman , associate director of the UniversityâÄôs Stem Cell Institute. Families using pre-implantation genetic diagnosis , a technology that screens embryos to determine a healthy donor for a sick child, do not choose diseased embryos for implantation, Kaufman said. Those embryos can then be used for federally funded research. The Nash family was the first to use pre-implantation genetic diagnosis to determine a genetic match in 2000. Their story inspired âÄúMy SisterâÄôs Keeper,âÄù the recent novel-turned-film by Jodi Picoult . Adam Nash donated umbilical cord blood and bone marrow to his sister Molly. MollyâÄôs umbilical cord blood transplant was originally carried out at Fairview Health Services , with help from researchers at the University of Minnesota. At the UniversityâÄôs Stem Cell Institute and Blood and Marrow Transplant Program, research in umbilical cord blood continues to develop. Umbilical cord blood cells have âÄúa lot of capacity for very remarkable growth,âÄù said Daniel Weisdorf, director of the Adult Blood and Marrow Transplant Program . The program does more umbilical cord blood stem cell transplants than anywhere else in the world, he said. Umbilical cord blood cells have a flexible immune system so âÄúyou can get away with partial tissue-type matching from an unrelated umbilical cord blood,âÄù Weisdorf said. Ethical concerns Umbilical cord blood cells are less controversial than embryonic stem cells. âÄúCord blood cells are the cells that would otherwise have been thrown away at the time of the babyâÄôs birth âĦ so they donâÄôt have any impact on the birth, or the delivery of the baby,âÄù Weisdorf said. But pre-implantation genetic diagnosis has been the source of much ethical debate. At the UniversityâÄôs Center for Bioethics, doctors and professors discuss where the research may spill over into eugenics or the idea of a âÄúdesigner baby.âÄù âÄúThere should be a bright distinction between testing for disease versus testing for … non-disease traits,âÄù said Jeffrey Kahn, director of the Center for Bioethics and a professor at the Medical School . ItâÄôs less acceptable to try to use genetic imaging technology for non-disease purposes, said Kahn, who has studied the Nash case closely. He said that case was controversial because MollyâÄôs parents were screening the embryo for not only Fanconi anemia, but genetic compatibility, which was not immediately linked to the embryoâÄôs health. Family complications Yet Kahn said as far as he can tell, the Nash family âÄúreally went on to live happily ever after.âÄù But complicated family relations occur in every circumstance, he said. Erik Ludwinski, 24, a former patient at Fairview Health Services for treatment for Neuroblastoma, a cancer of the nervous system, has also experienced these complications. Ludwinski decided against using his genetically matched sisterâÄôs bone marrow in a transplant because he wanted to protect her. When he told her about the situation, âÄúShe just got scared. She was shaking and everything, and I just realized I couldnâÄôt put her though this, so I decided I didnâÄôt want to use her in the transplant,âÄù he said. Ongoing research ObamaâÄôs decision to open federal funding will allow for more development at the University of MinnesotaâÄôs Masonic Cancer Research Center, Stem Cell Institute and Blood and Marrow Transplant Program . Kaufman called the new guidelines a âÄúvery reasonable approach,âÄù and he said the federal funding will open stem cell lines to his lab, which currently works with three or four human embryonic stem cells. New cell lines may offer some advantages. In the Blood and Marrow Transplant Program, new research will focus on blood-forming stem cells and turning them into subsets of immune cells that could do a better job fighting cancer, Weisdorf said. Ludwinski said cancer research is developing rapidly. He was the worldâÄôs first patient to receive total marrow irradiation at Fairview in 2006. The procedure allowed doctors to target cancer in the bone marrow, and minimize side effects. âÄúThey did it with really low complications; I only got sick the first day,âÄù he said. âÄúI think thatâÄôs a really good indication that theyâÄôre getting somewhere in their research.âÄù
Federal restrictions on stem cell research loosened
The University and Fairview have been at the forefront of embryonic and donor research.
Published July 7, 2009
0