Anemia, Diamond-Blackfan

Embryos screened to create 'savior siblings'

Babies compatible as stem-cell donors

Associated Press, Journal Sentinel staff

Wednesday, May 5, 2004

Chicago -- In a growing practice that troubles some ethicists, a Chicago laboratory helped create five healthy babies so that they could serve as stem-cell donors for their ailing brothers and sisters.

The made-to-order infants, from different families, were screened and selected when they were still embryos to make sure they would be compatible donors. Their siblings suffered from leukemia or a rare and potentially lethal anemia.

This is the first time embryo tissue-typing has been done for "sporadic, very frequent disorders" such as leukemia that aren't inherited, and the results suggest that many more children than previously thought could benefit from the technology, said Anver Kuliev, a Chicago doctor who participated in the research.

"This technology has wide implications in medical practice," Kuliev said Tuesday at a news conference.

Kuliev said the healthy embryos that were not matches were frozen for potential future use. But some ethicists said such perfectly healthy embryos could end up being discarded.

"This was a search-and-destroy mission," said Richard Doerflinger of the U.S. Conference of Catholic Bishops. The chosen embryos "were allowed to be born so they could donate tissue to benefit someone else."

Valparaiso University professor Gilbert Meilaender, a member of the President's Council on Bioethics, called the practice "morally troubling."

The council recently called for increased scrutiny of the largely unregulated U.S. infertility industry.

A new poll suggests there is wide public support for creating "savior siblings." A poll of more than 4,000 Americans released this week by the Genetics and Public Policy Center at Johns Hopkins University found that 61% approved of using embryo screening for this purpose.

However, 57% disapproved of using it to select the sex of a child, and 80% were concerned that such technologies could "get out of control" if unregulated. The survey is the largest done so far on the issue.

Tissue typing

The cases involved prenatal tests called pre-implantation HLA testing, pioneered at Chicago's Reproductive Genetics Institute.

The tests are an offshoot of pre-implantation genetic diagnosis, which has been done for more than 1,000 couples worldwide to weed out test-tube embryos with genetic diseases such as Down syndrome, or, more recently, for sex selection.

The institute's doctors made headlines four years ago after performing embryo tissue typing plus genetic disease screening for a Colorado couple who wanted to create another baby to save their daughter, who had a rare inherited disease called Fanconi anemia. The resulting baby boy, Adam Nash, donated bone marrow in an operation doctors said was a success.

Since then, embryo tissue typing with genetic disease testing has been performed more than three dozen times worldwide, with most of the cases done at the Chicago institute, Kuliev said.

Kuliev said the latest cases are the first instances in which embryos were tissue-typed but not screened genetically for diseases.

The cases, reported in today's Journal of the American Medical Association, involved nine couples who submitted embryos that underwent tissue-typing tests during 2002 and 2003. Five had infants considered suitable donors.

So far, stem cells from the umbilical cord blood of one infant have been donated to an ailing sibling, said Kuliev. He called the operation a success but said the older child would need continued monitoring to be sure.

Another baby was born in June to an English couple who traveled to Chicago after British fertility authorities denied them permission to undergo the procedure in England, said Mohammed Taranissi, a London doctor who co-wrote the JAMA report. The couple's older child has Diamond-Blackfan anemia, a rare blood ailment that can lead to leukemia. Taranissi said a transplant from the baby boy's umbilical cord blood is scheduled soon.

Kuliev said the institute had done HLA embryo testing alone for more than a dozen other couples and demand is growing.

Three Milwaukee-area couples have sought help creating embryos for this purpose in the last year from the pre-implantation genetic diagnosis program run by Children's Hospital of Wisconsin, Froedtert Memorial Lutheran Hospital and the Medical College of Wisconsin, said its geneticist, physician David Bick.

He referred them to the Chicago clinic because his program screens embryos only for genetic defects, but he sees nothing wrong with doing it to help parents seeking a donor for a seriously ill child.

"I personally would feel comfortable helping couples out to do this," he said. "I've met parents involved in this very difficult decision. I don't think that couples do this lightly at all."

Bick noted that many children with life-threatening diseases can't wait for a donor sibling to be conceived and born.

"Some kids need a bone marrow transplant tomorrow," he said.

No known risks to embryos

For years, families with sick children have conceived babies without costly test-tube procedures, taking a 1-in-4 chance that the child will be a match for the ailing sibling, said University of Wisconsin-Madison medical ethicist Norman Fost, who wrote a JAMA editorial.

Some have had abortions when standard prenatal testing showed the child would not be a suitable donor, he said.

The new procedure, he noted, does not involve abortion and poses no known risks to the embryos. Furthermore, parents seeking donor babies typically are well-intentioned and love the donor children, Fost said.

"Of all the reasons people have babies, this would seem to be a wonderful reason. Most reasons are either mindless sex or selfish reasons," he said.

R. Alta Charo, a medical bioethicist at UW, also noted that people have mixed reasons for having children, not all of which have to do with the welfare of the child, such as having a baby because they want an existing child to have a playmate, or to please grandparents.

"It's not that you can't use people as a means to an end, it's that you can't use them merely as a means to an end. There has to be some regard for them as people," she said.

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Marilynn Marchione of the Journal Sentinel staff contributed to this report.

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