'Savior sibling' raises a decade of life-and-death questions

Ten years ago a little girl from Colorado made medical history when her parents and her doctor at the University of Minnesota used genetic screening to create a baby that could save her life.

Now, 16 years old and back in Minnesota for her 10-year checkup, Molly Nash is unimpressed that her little brother -- her irritating little brother -- became a "savior sibling" by giving her his umbilical cord blood -- the sole reason she's alive today to back sass her parents.

Her parents, however, know what was at stake. Jack and Lisa Nash were offered a long-shot chance to save the life of their daughter and to have more children who did not have the fatal disease they both carry in their genes.

"I thank God every day that I have a 16-year-old to fight with," said Lisa Nash, who brought Molly to the university last week.

When their story first became public, reaction from around the globe ranged from astonishment to horror and helped fuel the backlash against embryonic research. Molly's doctor at the U, Dr. John Wagner, was accused of playing God.

Over the decade the ethical debate has subsided and the reproductive technologies they used to conceive and test their second child have become mainstream.

But Wagner and others who have watched the technologies advance and spread say the larger ethical questions raised by the Molly Nash case are more urgent than ever. They say government and professional oversight of reproductive technology is long overdue.

"The question is: Will you say no to anything that parents will ask for?" said Jeff Kahn, director of the university's Center for Bioethics.

Rare disease, novel idea

Molly Nash was born with a severe type of Fanconi anemia, a blood disorder that almost always results in leukemia by the age of 10. It's rare, but far more common among people of Eastern European Jewish descent like the Nashes, who live in Englewood, Colo. Until Molly was born they had never heard of it and had no idea that they each carried a gene for it.

The only treatment is a bone marrow transplant. The greatest likelihood of success is when the donor marrow comes from a sibling who has genetically identical tissue, called HLA.

The Nashes thought they would never have more children -- until Wagner, an expert in bone marrow transplantation, came to them with a novel idea.

They could use in-vitro fertilization (IVF) to produce several embryos, then genetically test all of them for both Fanconi anemia and HLA type. If the genetic dice rolled in their favor, they would choose the healthy embryo, have a healthy baby and Wagner could use the infant's umbilical cord blood as a source of new bone marrow for Molly.

It took several rounds of in-vitro fertilization, and tens of thousands of dollars borrowed from Jack's parents, to get an embryo that cleared both hurdles. But six weeks after Adam was born, Molly got her transplant.

"We were doing the right thing for our family," Lisa Nash said last week.

Then the headlines hit. One of the most memorable for Lisa Nash was the New York Post's -- "Frankenstein Baby." One of Wagner's favorites was "Evolution Is Dead."

"How did we go from saving a child to evolution is dead?" he said.

Few questioned the Nashes' decision to use genetic testing so they could have a child without Fanconi anemia. The critics focused on their decision to use genetic screening to select a child for a trait that would benefit someone else, Kahn said. Also, it raised the question of whether they wanted another child or were simply trying to save Molly.

"People have all sorts of motivations for having children," Kahn said. "Some are virtuous, and some not so much. At least they had a good reason for having a child."

The Nashes said they found some of the reaction ludicrous. After all, they simply used a few teaspoons of Adam's umbilical cord blood that would otherwise "have hit the trash can," Lisa Nash said. "And Adam is not a designer baby."

New ethical questions

Since Molly's transplant Wagner has done the same with "savior siblings" for dozens of other children with Fanconi anemia and other disorders. Genetic testing of embryos is done for hundreds of different types of diseases at IVF clinics and transplant centers across the country. Wagner has recently pioneered "savior sibling" bone marrow transplants for children with a type of genetic skin disease, and he's finding that the transplanted marrow cells are capable of making new skin.

But he's encountered a number of cases that have made him uneasy and, he said, make the case for regulation and oversight of IVF clinics and transplant centers.

One of his patients, for example, had four embryos implanted in her uterus because the testing for their genetic tissue typing failed. Her IVF doctors said they would test the fetuses and abort the ones that didn't match her sick child.

"I wasn't aware of it," Wagner said, because IVF clinics create the embryos and do the genetic testing. He hears from the parents of his young patients once they succeed or give up.

In that case, none of the fetuses matched the sick child, and the parents decided to abort all four. Their sick child received a bone marrow transplant from a nonrelative but died. "I thought that was misuse of the technology," Wagner said.

In another case, the mother of one of his patients lost a pregnancy when a medical procedure ruptured her uterine membrane. (He usually asks the mothers of his patients to do an amniocentesis, a genetic test for fetuses, as a back-up measure, and this was one of the rare instances when the procedure ruptured the sack that held the fetus.)

In that case, Wagner said he could have used tissue from the liver of the fetus for his patient's transplant. But then he stumbled over the inconsistencies in this country on the regulations around abortion and embryonic research. A federal law prohibits a mother from using fetal tissue to aid in the treatment of someone within her family.

Those parents were able to try again, and the next time they were successful, and their child received a transplant, he said.

Today all the major IVF clinics do genetic testing of embryos at the parents' request. The Nashes used it for their third child, who is now 7.

Most of the time, according to a 2005 survey of IVF clinics, they did it to test for diseases and HLA tissue typing. But about one time out of 10, it was used for gender selection, according the survey. Eventually, Kahn said, as more genes for traits such as hair color or height or skin type are identified, the choices facing parents will expand as well.

"Is it time to think about external oversight?" he said.

Josephine Marcotty • 612-673-7394