Supply and Demand: Babies Made to Order

The Pressure for Perfection Leaves Observers Uneasy

CHICAGO, MARCH 2, 2002 ( Designer babies are increasingly becoming a fact of life. A combination of artificial fertilization and pre-implantation genetic screening is being used to select babies according to desired characteristics. In many cases parents are motivated by understandable desires to avoid illnesses in their progeny. But in the process many innocent lives are sacrificed, namely, the embryos considered not fit to survive.

A couple of recent cases made the headlines in newspapers around the world. In the United States, doctors in Chicago used genetic screening to select an embryo for a woman who suffers from a genetic defect that causes an early onset of Alzheimer´s disease. The baby was born 17 months ago, but the news was only announced this week.

While some welcomed the news as a way of saving the baby from this problem, others expressed concern over what it means for the future. “The path we´re on, pretty soon no baby is going to be good enough,” said Barbara Katz Rothman, a sociologist at the City University of New York. “It´s just increasing the sense of guilt and responsibility on women,” the Washington Post reported Feb. 27.

Pre-implantation screening is now available for many diseases. And, the Post reported, it is used not only to eliminate embryos with defects that lead to fatal ailments in childhood. It is also used to cull embryos carrying genes that only modestly elevate a newborn´s risk of disease or that do not cause disease until late in life.

Days earlier in Britain, controversy broke out over the decision by the Human Fertilization and Embryology Authority (HFEA) to give clearance for the creation of a new baby to the parents of a boy who suffers from a genetic disorder.

Shahana and Raj Hashmi had asked for permission to use genetic screening and in vitro fertilization to create a baby whose tissues would match that of their son, Zain, reported the London daily Times on Feb. 23. Zain suffers from a rare blood disorder, thalassemia major, a potentially fatal disease. A bone marrow transplant could save him, but a search for a suitable donor failed. When the baby is born, stem cells from the blood in the umbilical cord will be removed and used to treat Zain. If that fails, a bone marrow transplant might be considered again.

A spokesman for the Catholic Diocese of Leeds, where the couple lives, said: “The use of the umbilical cord or its cells after the child has been born does not necessarily cause a problem. However, the artificial nature of the conception of the child would cause difficulty for Roman Catholic theologians since it cannot be accommodated within the Church´s teaching on the transmission of human life,” the Telegraph newspaper reported Feb. 23.

Jack Scarisbrick, national director of Life, said: “This is a consumerist attitude to children. One understands the plight of the parents, but we have to hold on to our principles in these difficult circumstances.”

The HFEA indication last December, that it would give permission for the creation of designer babies, brought criticism from Lord Winston. The professor of fertility studies at Imperial College, London, had helped to develop the technique of pre-implantation genetic diagnosis.

Writing in The Times on Dec. 15, he commented that the child “will owe its life to its parents´ love for the older sibling. And it may, in time, feel extremely guilty if the treatment fails, or if it does not want to undergo the surgery required for a transplant of stem cells.”

Lord Winston also pointed out that genetic diagnosis with tissue typing is extremely difficult and now carries no more than a 2% to 3% chance of success. Yet, he observed, “The real concern is that we might in time debase our own humanity.”

Days before the news of the Hashmi case broke, a baby girl was born in the United Kingdom in the hope that her cells would save an older brother from a relapse of leukemia. The mother underwent treatment in the United States, given that at that time it was still prohibited in Britain, the Guardian reported Feb. 16.

The parents of the baby have a 5-year-old son who is recovering from leukemia after chemotherapy. If he suffers a relapse in the next few years, he may require a bone marrow transplant.

The mother underwent IVF treatment and the embryos underwent genetic screening to make sure that the one implanted in the womb had the particular configuration of genes needed to ensure compatibility in the event of a transplant.

Male embryos rejected

Another recent case is that of Colleen Convery in the United States. According to the Boston Globe on Dec. 11, she did not want her baby to suffer the same fate as her three brothers. All of them died of Duchenne muscular dystrophy, a form of the muscle-wasting disease that usually kills its victims before their 30th birthdays. Fertility specialists at Brigham and Women´s Hospital in Boston fertilized eggs and, based on the resulting embryos´ sex chromosomes, selected only females to implant in Convery´s womb.

So far, more than 700 healthy babies have been born worldwide after undergoing the procedure, according to the International Working Group on Pre-implantation Genetics, reported the Boston Globe.

The use of screening for sex selection is causing concerns. “Ultimately, gender selection will reinforce gender discrimination,” said Evelyne Shuster, a medical ethicist at the University of Pennsylvania and a former member of the ethics committee of the American Society for Reproductive Medicine. Shuster said this is particularly true in countries “where the main human rights problems are inequality and discrimination.”

Destiny in our genes?

Some fear that an ever-wider application of embryo selection will foster a mentality based on genetic determinism. Larry R. Churchill, professor of social medicine and co-director of the Center for Health Ethics and Policy at the University of North Carolina at Chapel Hill, addressed this matter in an article in the November issue of the magazine The World and I.

Churchill observed that the central belief of genetic determinism is that we are our genes, “that our attitudes, actions, characteristics, or health status are fixed in some fundamental and pervasive way by our genetic makeup.”

But this “simplistic thinking about how to explain diseases” runs the risk of diverting “our attention away from the massive contributions made by environmental and social factors in both medical and social arenas” he wrote. The underlying danger, commented Churchill, is that “genetic determinism uses biological cover for prejudice, stigmatization and cultural subjugation. And it is appealing because it seems to confirm our prejudices about those who we are prone to see as defective or inferior.”

This could lead us to a new form of eugenics, observed Garland E. Allen, a historian of science at Washington University, in St. Louis, Missouri. Writing in the Oct. 5 issue of Science magazine, Allen noted how increases in health care costs and a growing intolerance of imperfection are leading us “to accept a bottom-line, cost-benefit analysis of human life.”

What will happen, Allen asked, if a health maintenance organization requires in utero screening, and refuses to cover the birth or care of a purportedly “defective” child? “If eugenics means making reproductive decisions primarily on the basis of social cost, then we are well on that road,” he concluded. Where that road ultimately leads, may be frightening to consider.

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