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A Matter of Life, Ethics

Is it right to create one child to save another? A British panel that could become a model for the U.S. tells an ailing boy's parents it's not.

October 29, 2002|Aaron Zitner | Times Staff Writer

BICESTER, England — Freshly changed into pajamas, Charlie Whitaker sucks on a pacifier and tries to ignore the needle in his father's hand. He focuses on the television while the needle goes into his belly, then winces as his father tapes it in place. The needle will stay there overnight so that the drug Desferal can filter into Charlie's body.

"Why do we give you Desi?" his father asks in a comforting ritual.

"To get rid of iron in my blood," answers the 4-year-old boy.

"And what does Billy Blood do?" his father asks.

"It keeps you alive," says the boy.

Charlie needs this nightly ritual, along with frequent blood transfusions, because his body cannot produce red blood cells. The disorder threatens his life. But illuminating one of the most gripping moral quandaries of modern genetics, a British government panel has barred the Whitakers from trying a promising new cure.

The reason: The cure depends on creating another person -- specifically to help Charlie. Charlie's parents would mix their eggs and sperm to produce embryos, a common fertility technique. But to select which embryo to grow into a baby, they would use a new screening test to find the one that could best donate blood-making cells to their ailing son.

Is it proper to create one child to help another? In the U.S., no government agency even considers the question. But for the British government panel, it is only the latest concern in a decade-long effort to determine what is proper -- and what is immoral -- as scientists put the human embryo to new uses.

The panel is called the Human Fertilization and Embryology Authority, and it is quickly becoming a major force in the worldwide debate over embryo science. Human cloning? The embryo authority barred it in 1998. Testing embryos to pick a child's sex? The panel sharply curtailed that in 1993.

Whether for research or high-tech reproduction, anyone in Britain who wants to create or use embryos needs the panel's permission. Even the most emotional plea is rejected if the 21 panel members decide, as they did in the Whitakers' case, that it violates the public interest.

Now, many other nations are turning to the British model as they grapple with the boom in fertility clinics and embryo stem-cell research. Canada is poised to approve a similar body. Officials from Taiwan, Japan and Ireland, among others, have consulted with the British panel.

There is even growing interest from the U.S., where there is relatively meager regulation of fertility techniques and private-sector embryo research.

Earlier this month, embryo authority chairwoman Suzi Leather consulted with President Bush's Council on Bioethics, an advisory group that is deciding whether to propose its own plan for regulating embryos. A report due soon from the Hastings Center, a well-known New York bioethics think tank, will recommend that U.S. officials copy the British model.

"I think we need a similar kind of body in the United States," said Francis Fukuyama, a political scientist at Johns Hopkins University and a member of Bush's bioethics council. Irving L. Weissman, a Stanford University stem-cell researcher and businessman, said adopting the British model "makes sense to me, if it has knowledgeable members."

Adopting something like the British authority would be a political challenge in the United States, where each side in the abortion debate fears that new embryo regulations could weaken its position.

And the Whitakers warn that regulation comes with a price: an intrusion on the traditional privacy of reproductive decisions and on the independence of doctors and patients to decide the course of their own treatment.

"The worst part of this is that medical science is dangled in our face as a potential cure, and then it is pulled away," said Jayson Whitaker, Charlie's father. "At the end of the day, this should be our decision for our children and our family."

Still, a growing number of critics say society should have a larger role in regulating techniques that touch on the earliest stages of human life.

The reason, they say, is that fertility doctors are increasingly treating patients who want to screen the genes of their embryos to guarantee that their next child will be a boy, or a girl, or free of serious familial diseases. Next, some people fear, could be the "designer baby" -- a child whose traits are ordered up as if they were features on a new car.

The debate goes beyond traditional fertility issues, thanks to the discovery of embryonic stem cells. Scientists want to study these cells for their potential to cure disease. But embryos must be destroyed to obtain the cells, drawing protest from people who see life as beginning at the moment of conception.

Only a small portion of the work using embryos falls under federal supervision in the United States.

The Food and Drug Administration regulates drugs and medical devices, but not medical procedures, such as reproductive techniques.

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