Parents create baby to save sister
Guardian: Wednesday October 4, 2000
Parents create baby to save sister
Julian Borger in Washington and James Meek
Doctors have used genetic screening to select a test-tube baby with precisely the right cells for him to act as a donor to his seriously ill older sister.
The case, the first of its kind to come to light, is certain to open a fierce debate on the ethics of designing babies with specific genetic traits.
The procedure, based on a selective form of in vitro fertilisation, could save the life of the six-year-old girl, who is suffering from a rare inherited disorder called Fanconi anaemia, which stops cell production in the bone marrow. But it has raised the fear that the technique could be extended to enable parents to "design" children with a variety of genetic traits.
Researchers in the rapidly developing genetic sciences say they believe there have been several similar cases which have not been made public.
Many couples with children with inherited diseases face the dilemma of deciding whether to have more babies, knowing that they too could also be born with the disorder. Some have conceived only to abort the foetus as soon as they discovered that it shared the defective genes. In vitro selection offers a less traumatic alternative.
Adam Nash, the baby at the centre of the case reported yesterday, was born on August 29. At his birth, doctors collected cells from his umbilical cord, which were then infused into his elder sister, Molly.
Fanconi anaemia is universally fatal without a transplant, but Molly is now said to have a 85-90% chance of recovering.
Their parents, Lisa and Jack Nash, had a 25% chance of passing on the Fanconi gene to any new child and were afraid of conceiving normally. So they made use of a new technique called pre-implantation genetic diagnosis.
Twelve embryos were created by standard in vitro fertilisation and single cells were taken from each of them to test for the Fanconi gene, as well as other measures of compatibility with Molly. Two of the embryos was found to have both these attributes and one of those was considered healthy enough to transfer to Lisa Nash's uterus.
Mrs Nash said she had decided to publicise her case because it would help other couples facing the same problem.
"We just wanted people to know that the technology was out there," she said.
Dr Paul Veys, a bone marrow transplant specialist at Great Ormond Street children's hospital in London, said he believ ed the Illinois case was a rare instance in which designing a child to be a donor was ethically justified.
"In this case, hopefully, you're going to end up with two children who are healthy. How can you argue against that? It's difficult," he said.
He said his department always recommended parents against naturally conceiving children to be donors for more common, non-genetic, diseases which require bone marrow transplants, such as leukemia.
"The ethics of having a child as a donor for an existing child is in principle wrong and we would never encourage it. The child conceived might have the same disease as its sibling, and it's likely to lead to unhappiness for the child so born, especially if the transplant doesn't work."
He said he was sure some parents had ignored the advice and conceived a child as a transplant donor, but there was no way to be certain, since the parents might have wanted another child in any case.
To some bioethicists, the apparent success of the Nash case is a mixed blessing. While saving the life of a child, it also presages a possible future in which parents can choose "boutique babies" from a whole range of genetic traits.
"You could say it's quickly becoming like buying a new car, where you decide which package of accessories you want," Jeffrey Kahn, director of the University of Minnesota's centre for bioethics, said.
"I suspect that it's only because we don't yet have the tests that we're not having parents asking for embryos without a predisposition to homosexuality or for kids who will grow to more than 6ft tall."
Mrs Nash rejected the suggestion that she may have opened a genetic Pandora's box.
"I'm not forcing this on anyone, just as I don't want anyone else to force their views on me. I just wanted to do what was best for my family," she said.
Paul Billings, a co-founder of the genetic research company GeneSage, said: "This is not the first case of its kind. There have been others but they have not wanted publicity."
Dr Billings, who is on the board of the Council for Responsible Genetics, said: "On the one hand this could theoretically commodify children, but on the other hand there is no evidence that children conceived this way are loved any less.
"There is a danger we are making a mountain out of a personal tragedy. I don't think that people are going to rush to IVF treatments, which are an alienating and expensive procedure ...
"As long as this family loves the child, then we should stay out of their business."