Science, Ethics Clash Over Infant Organ Donations Bill

What began as an ironic nightmare for a San Francisco couple whose baby was born without the central part of its brain has turned into a controversy that could make California the first state to confront an ethical dilemma that could lead to legalization of a form of euthanasia.

The issue is whether state law should be amended to permit the removal of organs for transplant from anencephalic babies, like the San Francisco baby. Such infants invariably die--usually within a few hours or, at most, within a few days.

A Legal Precedent?

Opponents of the proposal fear that to declare such babies legally dead while their hearts are still functioning would set a precedent to permit organ harvesting of coma victims and other disease victims. Proponents dispute this, saying that anencephalic babies are a uniquely tragic category and that making use of their organs would at least give their parents some comfort.

It is a classic collision of the limits of science and the constraints of traditional ethics that has already divided physicians, puzzled attorneys and caused ripples to spread through the California Legislature.

The controversy may be just a hint of conflicts yet to come between transplant surgeons whose improving techniques force them to search ever more widely for potentially usable organs, and ethicists, fearful of the precedents that could be set by tinkering with existing legal definitions of death.

The issue began to take form in August of 1985 when an ultrasound evaluation discovered that a baby daughter about to be born to Gail and Greg Marell, a San Francisco couple, had a condition known an anencephaly. Gail Marell was in her ninth month of pregnancy.

No Central Parts of Brain

Anencephaly means that the fetus has developed without any trace of the central parts of the brain--those that control every aspect of reasoning so crucial to human life. It is not survivable; in fact, many affected fetuses abort spontaneously. Anencephaly is one of a small number of conditions on which there is wide agreement that a third-trimester abortion may be ethically justified.

No treatment is possible. The catch is that an anencephalic baby does have a brain stem--that portion of the brain that controls the automatic, reflex body functions like breathing and heartbeat. Thus, anencephalics are not brain dead. To the contrary, they are as “brain alive” as people in long-term comas.

Anencephaly is the most common of deformities called neural tube defects--conditions that also includes spina bifida and water on the brain. Anencephaly occurs in one out of every 700 to 1,000 fetuses, according to experts at the National Institute for Child Health and Human Development. The condition can be detected as early as the 20th or 21st week of pregnancy. Except for the absence of the central brain lobes, anencephalics have normally developed body organs--including hearts, lungs, kidneys and livers.

Gail Marell says that when she and her husband realized what was wrong with their baby, they immediately thought of offering the little girl’s organs for transplant. But when they inquired at the UC San Francisco Medical Center, they were told California law prohibits what they intended because anencephalics do not fit legal criteria for brain death in the state Uniform Determination of Death Act--a product of the debate more than a decade ago prompted by the coma case of Karen Quinlan.

The Marells’ frustration was shared by Dr. Michael Harrison, a UC San Francisco transplant surgeon who has counseled, he says, a large number of couples whose fetuses are diagnosed as anencephalic.

Bill Introduced

After reading a story about the situation in the San Francisco Chronicle, state Sen. Milton Marks (R-San Francisco) decided to introduce a bill amending the Uniform Determination of Death Act to declare anencephalic babies legally dead. The change would make the children’s vital organs available for transplant as soon as they are born--before deterioration of the organs begins.

Marks said he focused on the emotionally charged situations of parents of anencephalics--never thinking that what he perceived as a bill with humanitarian intentions would set off a raging ethical debate.

What ethicists objected to, according to Alexander Capron, a USC professor of law, medicine and public policy, was not the humanitarian motive of helping to ease the sense of tragedy for parents of babies who cannot live. Rather, Capron said, ethicists fear modification of the law could eventually serve as a precedent to permit organ harvesting of coma victims and even some young children with severe, though non-fatal, brain deficits.

As Capron and others see it, widening the definition of death to include anencephalics would crack open a door of precedent that would prove far more difficult to close than proponents of the narrow legislation believe. “I don’t mean that as an accusation,” Capron said. “Marks probably would not vote for the next extension (of the concept).

“But the Legislature would have to have some basis of consistency. What is the relevant distinction between anencephaly and someone in a coma? Right now, we have a very bright line (the specific definition of brain death). That could disappear.”

A Call for Amendments

Surprised, he says now, by the magnitude of opposition, Marks eventually amended his bill so what awaited action in Sacramento by last spring called only for creation of a state study commission to ponder the ramifications of declaring anencephalics dead.

The bill never came to a vote, but Marks said late last week that--in the wake of a hearing held on the issue in late October--he may reintroduce the study commission bill in January. He declined to say when he would reach a decision. In its modified form, the study commission bill claimed two Senate co-authors, including state Sen. Diane Watson (D-Los Angeles), and six co-authors in the Assembly.

Marks insists his bill would apply to anencephalics only--with no exceptions and no loopholes. “I don’t sympathize with the viewpoint of those who are opposed to it,” he said, “because my intention is quite clear. I don’t want to do anything that goes beyond” the specific declaration that anencephalics are dead at birth.

Nationally recognized experts in ethics agree the tempest in California could easily be the first of many throughout the country in the next few years, prompted by steady advances in transplant science and inevitable greater demand for donor organs.

“I think at this point, it’s a theoretical kind of discussion,” said Daniel Callahan, director of the famed Hastings Center, a think-tank devoted to ethical issues in Hastings-on-Hudson, N.Y. “There is a sense that organs are needed, particularly for very young infants,” Callahan said. “And so the question has been raised about (the ethical aspects of) harvesting them.

A Volatile Issue

“There is a shortage of organs and these babies are a possible source. There is no doubt there are researchers and transplanters out there who would be very eager to get them--if the whole issue was publicly blessed. It’s a very volatile issue, symbolically as well as literally.”

It is also a difficult issue for organized medicine. The California Medical Assn., for instance, took no position on the Marks legislation because the medical association itself is split between the urgings of transplant surgeons and the reservations of other doctors. Petitions have circulated at UCLA that essentially confirm that doctors are deeply divided--with their specialties often determining their philosophies on this issue.

Ironically, noted both Dr. Alan Shewmon, an assistant professor of pediatric neurology at UCLA, and Gilbert Meilaender, a professor of religion and ethics expert at Oberlin College in Ohio, even many transplant surgeons are uncertain how valuable an organ source anencephalics in general could become. In fact, it turns out the Marell baby would not have been an acceptable donor, even if legal obstacles did not exist.

The baby died, but its organs were not suitable for transplantation--a fact that added an ironic twist to the controversy.

Rather, said Meilaender, the relevant question is one of ethics wider than just the plight of anencephalics. “There is a question here wholly apart from that,” he said in a telephone interview. “There aren’t a lot of people around to speak up for anencephalics. It would be easy to define them as out of life and into death.

The Next Logical Step

“But stipulating this kind of definition might logically begin to set a precedent for other classes of human beings--like adults in (seemingly) irreversible comatose states. Is their situation really different? It’s not clear. If we make an exception for anencephalics, might it not be much harder for society not go to on to the next logical conclusion?”

To Shewmon, the ramifications of what might happen to anencephalics are somewhat more immediate. “Regardless of what kind of precedent it would set,” he said, “anencephaly is not brain death and no legislature can make it brain death. The proponents of this redefinition say this would apply only to anencephalics. But that’s arbitrary and totally illogical.

“And as soon as you have a law that says you can start taking organs from someone who isn’t dead just because they happen to be about to die of a terminal condition, you have a real Pandora’s box. I’m not at all against transplants. I’m very excited about the field. But you can’t go using donors who are still alive.”

But to Harrison and prominent pediatric transplant surgeons like Loma Linda University Medical School’s Dr. Leonard Bailey, the opposition to the anencephalic exception has missed both the point of what proponents of changing the law intend and given short shrift to the emotional quagmire of the parents of anencephalic babies.

“There are two levels on which you can deal with this,” Harrison said, “the abstract, which is the one (cited by) everyone who’s never seen one or dealt with the family of an anencephalic or had to deal with the nitty gritty of cases like this. People who deal with this problem in real life are extremely sympathetic (to the idea of changing the law) because they know we have to do better by these families.

“I would be entirely sympathetic with the concern (of the opposition) if it was possible that (declaring anencephalics to be dead would establish a wider precedent). We cannot afford a slipperier slope than what we have. There is nothing that would be worth that.

“But anybody who has ever looked at an anencephalic (knows that you cannot confuse the condition) with any of those other things that are being suggested. That’s crazy. It’s just flat wrong.”

Besides, agree Harrison and Bailey, the determination of death act could, theoretically, be modified at any time--regardless of whether anencephalics are included.

“Anencephaly is so well defined,” said Bailey. “There’s no mistaking it for anything else. It can be dealt with as a separate issue. The issue is about anencephalics and what a distinct entity it is. From that point of view--a medical point of view--the argument that it (changing the law) would go further (toward permitting harvesting of organs from others who are not brain dead) becomes hollow.”