A Balancing Act of Life and Death

By Christine Gorman

After years of research, doctors feel they are ready to try to alleviate many incurable conditions, ranging from congenital heart defects to degenerative nerve diseases, through the transplanting of organs and tissues. Their pioneering triumphs, however, have created a Faustian dilemma. Each year in the U.S. hundreds of infants die who could have been saved by a new heart; literally millions of people with diseases like Parkinson's and Alzheimer's may eventually benefit from tissue implants. Should physicians manipulate the definitions of life and death to meet this growing demand for donor tissue? The question is taking on a new immediacy as doctors begin transplanting tissue from once unimagined sources: aborted fetuses and anencephalic newborns.

Surgeons at Loma Linda University Medical Center in California only last October transplanted a heart into Newborn Paul Holc. What made the transplant different was that the donor, a Canadian infant known as Baby Gabriel, was born anencephalic, that is, without most of her brain. Like virtually all anencephalics, she could not have survived more than a few days outside the womb; unlike most, Gabriel died before her healthy organs deteriorated. Then, early in January, surgeons in Mexico City announced that for the first time, they had successfully grafted tissue from a miscarried fetus into the brains of two Parkinson's victims, who have since improved dramatically.

To many, the fetal-tissue transplant raised a troubling question: Should doctors be allowed to use tissue from intentionally aborted fetuses to alleviate an otherwise hopeless condition? The Baby Gabriel case focused on even knottier dilemmas: Should laws defining death be rewritten to allow the "harvesting" of anencephalic donors? Should their existence be prolonged solely to enable doctors to take their organs?

Such issues are not academic. In the past few months, TIME has learned, Baby Gabriel's Canadian physicians kept three other anencephalic children on respirators in order to use their organs for transplantation. "I can't imagine a time when there have been so many advances in medical research that have raised such serious issues," says Neonatologist Lawrence Platt of the University of Southern California. Declares Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota: "Our fear is that somehow reproduction has shifted away from an act that creates a family into an arena in which money, profit and benefit for others start to enter."

Parents of anencephalics have been in the forefront of the campaign to make use of their infants' organs, as a way of making their brief, tragic lives meaningful. Such babies are often born with no skin or skull above their eyes. They have only an exposed bud of a brain and a brain stem that keeps their heart and lungs working erratically. Under current state laws, death occurs when all brain activity has ceased. Anencephalic infants are technically alive until their brain stem stops functioning. By then, however, the increasingly insufficient oxygen supply has ruined any potentially useful organs.

For some doctors, the respirator is an ideal solution: it assures a proper oxygen supply while putting off the infant's inevitable death. "There is no ethical problem with using the organs after the child is dead," says George Annas, professor of health law at Boston University School of Medicine. "The problem lies in the process of getting the child from alive to dead." There are certainly precedents for keeping donors alive artificially for the benefit of others. Accident victims, for example, are frequently kept on respirators to keep their organs fresh.

But the problem with anencephalics is starkly different: doctors frequently do not know when death has legally occurred. Conventional measures of brain death are useless. Ethicist Caplan suggests that doctors rely on an older standard: that death occurs when the infant's pulse and breathing have stopped. Thus anencephalics would be taken off the respirator at set intervals to see whether spontaneous breathing had ceased. When it stopped, the infants would be pronounced dead and their organs taken. The few medical centers like Loma Linda that handle anencephalic transplants currently follow similar protocols.

The principal difference between using anencephalics and aborted fetuses as sources for organs, Caplan says, is a matter of parental motive. Few doctors have problems with using the tissues of miscarried fetuses. But in the weeks since the Mexican tissue transplant, a handful of women have considered the possibility of getting pregnant for the purpose of providing tissue to treat themselves or a family member. Ray Leith, a young woman whose aging father has Parkinson's disease, declared her willingness to do so on national television early this year; her father refused the offer. Others have raised even broader fears that, as Feminist Author Gena Corea puts it, "women will be pressured by doctors and families, or by economic need, to become fetal factories."

To prevent such abuses, doctors and ethicists suggest banning the sale of fetal tissue worldwide and prohibiting women from designating who would receive their fetus' organs. Once such safeguards are in place, however, they believe that physicians can properly use tissue from abortuses for research and treatment. Except in the case of miscarriages, Dr. John Willke, president of the National Right to Life Committee, vehemently disagrees. "The abuse is not in the sale of those tissues," he says, "but in killing the baby in the first place." Janice Raymond, professor of women's studies at the University of Massachusetts at Amherst, is concerned that such attitudes, as well as practices like surrogate motherhood, have already begun to erode women's control over the childbearing process. "No one is holding a gun to any woman," she says. "But I think it's important to look at the entire context in which this issue of fetal tissue is arising." That may be easier said than done.

With reporting by James Willwerth/Loma Linda and Suzanne Wymelenberg/Boston