Federal restrictions on stem cell research loosened

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 NIH’s guidelines follow President Obama’s original lift of the Bush Administration’s 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 University’s 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 “My Sister’s Keeper,” the recent novel-turned-film by Jodi Picoult .
Adam Nash donated umbilical cord blood and bone marrow to his sister Molly.
Molly’s umbilical cord blood transplant was originally carried out at Fairview Health Services , with help from researchers at the University of Minnesota. At the University’s Stem Cell Institute and Blood and Marrow Transplant Program, research in umbilical cord blood continues to develop.
Umbilical cord blood cells have “a lot of capacity for very remarkable growth,” 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 “you can get away with partial tissue-type matching from an unrelated umbilical cord blood,” Weisdorf said.

Ethical concerns
Umbilical cord blood cells are less controversial than embryonic stem cells.
“Cord blood cells are the cells that would otherwise have been thrown away at the time of the baby’s birth … so they don’t have any impact on the birth, or the delivery of the baby,” Weisdorf said.
But pre-implantation genetic diagnosis has been the source of much ethical debate.
At the University’s Center for Bioethics, doctors and professors discuss where the research may spill over into eugenics or the idea of a “designer baby.”
“There should be a bright distinction between testing for disease versus testing for ... non-disease traits,” said Jeffrey Kahn, director of the Center for Bioethics and a professor at the Medical School .
It’s 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 Molly’s parents were screening the embryo for not only Fanconi anemia, but genetic compatibility, which was not immediately linked to the embryo’s health.

Family complications
Yet Kahn said as far as he can tell, the Nash family “really went on to live happily ever after.” 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 sister’s bone marrow in a transplant because he wanted to protect her.
When he told her about the situation, “She just got scared. She was shaking and everything, and I just realized I couldn’t put her though this, so I decided I didn’t want to use her in the transplant,” he said.

Ongoing research
Obama’s decision to open federal funding will allow for more development at the University of Minnesota’s Masonic Cancer Research Center, Stem Cell Institute and Blood and Marrow Transplant Program .
Kaufman called the new guidelines a “very reasonable approach,” 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 world’s 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.
“They did it with really low complications; I only got sick the first day,” he said. “I think that’s a really good indication that they’re getting somewhere in their research.”