TIME: Almanac 1993/TIME Almanac 1993.iso/time/061791/0617620.000

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                                                                                ETHICS, Page 54

COVER STORIES

When One Body Can Save Another


A family's act of lifesaving conception was on the side of angels,
but hovering in the wings is the devilish ghost of Dr. Mengele

By LANCE MORROW -- Reported by Mary Cronin/New York, Barbara
Dolan/Chicago and Elaine Lafferty/Los Angeles


    Now the long quest was ending. The surgeons bent over the
grail: a 14-month-old girl named Marissa Ayala.

    She lay anesthetized upon an operating table in the City
of Hope National Medical Center in Duarte, Calif. A surgeon
inserted a 1-in.-long needle into the baby's hip and slowly
began to withdraw bone marrow. In 20 minutes they removed about
a cup of the viscous red liquid -- the stuff of resurrection.

    The medical team then rushed the marrow to a hospital room
where Marissa's 19-year-old sister Anissa lay waiting. Through
a Hickman catheter inserted in the chest, the doctor began
feeding the baby's marrow into Anissa's veins. The marrow needed
only to be dripped into the girl's bloodstream. There, like
salmon heading home to spawn, the healthy marrow cells began to
find their way to the bones.

    Done. If all goes well, if rejection does not occur or a
major infection set in, the marrow will do the grail's work. It
will give life to the older sister, who otherwise would have
died of chronic myelogenous leukemia. Doctors rate the chance
of success at 70%.

    The Ayala family had launched itself upon a sequence of
nervy, life-or-death adventures to arrive at that denouement
last week. Anissa's leukemia was diagnosed three years ago. In
such cases, the patient usually dies within five years unless
she receives a marrow transplant. Abe and Mary Ayala, who own
a speedometer-repair business, began a nationwide search for a
donor whose marrow would be a close match for Anissa's. The
search, surrounded by much poignant publicity, failed.

    The Ayalas did not passively accept their daughter's fate.
They knew from their doctors that the best hope for Anissa lay
in a marrow transplant from a sibling, but the marrow of her
only brother, Airon, was incompatible. Her life, it seemed,
could depend on a sibling who did not yet exist.

    A brave, surreal gamble. First, Abe had to have his
vasectomy surgically reversed, a procedure with a success rate
of just 40%. That done, Mary Ayala ventured to become pregnant
at the age of 43. The odds were 1 in 4 that the baby's bone
marrow would match her sister's. The Ayalas won that gamble too.
In April 1990 Mary bore a daughter, Marissa. Fetal stem cells
were extracted from the umbilical cord and frozen for use along
with the marrow in last week's transplant. Then everyone waited
for the optimum moment -- the baby had to grow old enough and
strong enough to donate safely even while her older sister's
time was waning.

    Twelve days before the operation, Anissa began receiving
intensive doses of radiation and chemotherapy to kill her
diseased bone marrow. As a result, she is losing her hair. Her
blood count is plummeting. Her immune system has gone out of
business. But in two to four weeks, the new cells should take
over and start their work of giving Anissa a new life.

    The drama of the Ayalas -- making the baby, against such
long odds, to save the older daughter -- seemed to many to be
a miracle. To others it was profoundly, if sometimes obscurely,
troubling. It called up brutal images -- baby farming,
cannibalizing for spare parts. Many saw in the story the near
edge of a dangerous slippery slope at the bottom of which they
glimpsed an abyss, and maybe the shadow of Dr. Mengele at work.

    A marrow transplant represents little risk to the donor:
Marissa's health was never in danger, and she came out of last
week's procedure with only an ache in the hip. In the words of
Dr. Mark Siegler, a medical ethicist at the University of
Chicago, "The morbidity rate for this operation is much less
than for roller-skating."

    What disturbed was the spectacle of a baby being brought
into the world not, it seemed, as an end in herself, attended
by all the sentiment and sanctity that people supposedly accord a
new life. Rather the baby was ordered up to serve as a means, as
a biological resupply vehicle.

    The baby did not consent to be used. The parents created
the new life, then used that life for their own purposes,
however noble. Would the baby have agreed to the transplant if
she had been able to make the choice? Metaphysics: Would the
baby have endorsed her own conception for such a purpose?

    People wanting a baby have many reasons -- reasons
frivolous, sentimental, practical, emotional, biological. Farm
families need children to work the fields. In much of the world,
children are social security for old age. They are vanity items
for many people, an extension of ego. Or a sometimes desperate
measure to try to save a marriage that is failing. Says Dr.
Rudolf Brutoco, Marissa Ayala's pediatrician: "Does it make
sense to conceive a child so that little Johnny can have a
sister, while it is not acceptable to conceive the same child
so that Johnny can live?" In American society, procreation is
a personal matter. Crack addicts or convicted child abusers are
free to have children.

    The Ayalas were surely procreating on the side of the
angels. Considered on the family's own terms, their behavior is
hard to fault. They acted from desperate first principles. Life
wants to live. The first duty of parents is to protect their
children. The Ayalas say they never considered aborting the
fetus if its marrow did not match Anissa's. They will cherish
both daughters in the context of a miracle that allowed the
older to live on and the younger to be born. It was possible to
see the drama as a visitation of grace.

    But their case resonated with meanings and dilemmas larger
than itself. The case opened out upon a prospect of
medical-technological possibility and danger that was like a
medieval navigator's map -- inscribed in blank mid-ocean, "Here
there be monsters."

    The monster possibility is this: in the past, it was
mostly cadavers from which transplant organs were "harvested."
Today, as with the Ayalas, life is being tapped to save life.
This suggests in some cases the sort of moral trade-offs that
were worked out in the blizzards of the Donner Pass in the
winter of 1846-47. Is there a principle of cannibalism involved?
Sometimes.

    Beyond the Ayala case, the ethics can become trickier.
What if a couple conceives a baby in order to obtain matching
marrow for another child; and what if amniocentesis shows that
the tissue of the fetus is not compatible for transplant? Does
the couple abort the fetus and then try again? Says Dr. Norman
Fost, a pediatrician and ethicist at the University of
Wisconsin: "If you believe that a woman is entitled to terminate
a pregnancy for any reason at all, then it doesn't seem to me
to make it any worse to terminate a pregnancy for this reason."
But abortions are normally performed to end accidental
pregnancies. What is the morality of ending a pregnancy that was
very deliberately undertaken in the first place? The slippery
slope becomes abruptly steeper.

    In the world of advanced medical technology, the uses of
living tissue have become very suddenly more complex and
problematic. A newly born infant suffering from the fatal
congenital malformation known as anencephaly will surely die
within a few days of birth. Anencephaly means a partial or
complete absence of the cerebrum, cerebellum and flat bones of
the skull. Such babies could be an invaluable source for organs
and tissues for other needy infants. Is that sort of
"harvesting" all right?

    Aborted fetal tissue has shown promise as a treatment for
Parkinson's disease and Alzheimer's disease. But such
experiments have mostly been blocked in the U.S. by a ban on
federal funding for research using fetal tissue. Some
antiabortion activists think that if the technique proves
successful, it would encourage women to conceive just to provide
material for relatives in need. A mother of a diabetic girl in
Maryland gives credence to such fears: "If the technique were
perfected today, I'd hop in bed right now. It's not an easy
issue. But I'd kill an unborn sibling to improve my daughter's
life."

    Transplant technology is developing so rapidly that new
practices are outpacing society's ability to explore their moral
implications. The first kidney transplants were performed over
35 years ago and were greeted as the brave new world: an amazing
novelty. Today the transplant is part of the culture --
conceptually dazzling, familiar in a weird way, but morally
unassimilated. The number of organ transplants exceeds 15,000
a year and is growing at an annual clip of 15%. The variety of
procedures is also expanding as surgeons experiment with
transplanting parts of the pancreas, the lung and other organs.
As of last week, 23,276 people were on the waiting list of the
United Network for Organ Sharing, a national registry and
tracking service.

    A dire shortage of organs for these patients helps make
the world of transplants an inherently bizarre one. Seat-belt
and motorcycle-helmet laws are bad news for those waiting for
a donor. The laws reduce fatalities and therefore reduce
available cadavers, thus inviting the mordant thought that the
speed limit should be raised when the donor-organ supply is low.

    A doctor's new dilemma: two weeks ago, Ronald Busuttil,
director of UCLA's liver-transplant program, heard that a liver,
just the right size and blood type, was suddenly available for
a man who had been waiting for a transplant. The patient,
severely ill but not on the verge of death, was being readied
for the procedure when Busuttil's phone rang. A five-year-old
girl who had previously been given a transplant had suffered a
catastrophe. Her liver had stopped functioning. Busuttil had to
make a decision. "I had two desperately ill patients," he says,
but the choice was clear. Without an immediate transplant, "the
little girl certainly would have died."

    Most organs come from cadavers, but the number of living
donors is rising. There were 1,788 last year, up 15% from 1989.
Of these, 1,773 provided kidneys, nine provided portions of
livers. Six of the living donors gave their hearts away. How?
They were patients who needed heart-lung transplant packages.
To make way for the new heart, they gave up the old one; doctors
call it the "domino practice."

    Ethical thought about the living-to-living transplants
divides into two general perspectives, two systems of thought
that are in many ways as incompatible as Apple and IBM. On one
side are the non-alarmist accommodationists. On the other side
are the biotechnical Luddites.

    The accommodationists review the history of innovation. In
the '50s, when artificial insemination with donor semen was
introduced, many ethicists said it separated procreation from
marriage in a destructive way. Pope Pius XII, who denounced
artificial insemination even from husband to wife, declared, "To
reduce the cohabitation of married persons and the conjugal act
to a mere organic function for the transmission of the germ of
life would be to convert the domestic hearth, sanctuary of the
family, into nothing more than a biological laboratory." When
Louise Brown, the first test-tube baby, was born in England in
July 1978, alarmists warned of a brave new world in which
government would control the production of children.

    The accommodationists, in other words, argue that all new
things are initially strange and disconcerting but eventually
become familiar, unthreatening and more or less acceptable. It
is an ethical point of view that reposes faith in the common
sense of society to weed out the potential horrors.

    In 1972 Dr. Thomas Starzl, the renowned Pittsburgh surgeon
who pioneered liver transplants, stopped performing live-donor
transplants of any kind. He explained why in a speech in 1987:
"The death of a single well-motivated and completely healthy
living donor almost stops the clock worldwide. The most
compelling argument against living donation is that it is not
completely safe for the donor." Starzl said he knew of 20 donors
who had died, though other doctors regard this number as
miraculously low, since there have been more than 100,000
live-donor transplants.

    Ethicists worry sometimes about the psychological damage
done to both donors and recipients. How will children react in
later life to being conjured up and used in this way? Consider
the case of Michelle Kline, a contestant in the 1989 Miss
America contest, who received a kidney from her brother 19
months before the pageant. She would not speak to him afterward,
although they later reconciled. "The sense of having part of her
brother inside her created tremendous tensions," says Renee Fox,
a medical-sociology professor at the University of Pennsylvania.
The tyranny of the gift: "It was a feeling of overwhelming debt
that she could not repay." Conversely, one kidney donor became
so depressed after the recipient did not thrive that he killed
himself in despair.

    There will never be enough cadaver organs to fill the
growing needs of people dying from organ or tissue failure. This
places higher and higher importance, and risk, on living
relatives who might serve as donors. Organs that are either
redundant (one of a pair of kidneys) or regenerative (bone
marrow) become more and more attractive. Transplants become a
matter of high-stakes risk-calculation for the donor as well as
the recipient, and the intense emotions involved sometimes have
people playing long shots.

    Family members become more and more pressed to provide
organs to save relatives. It is a bizarre request, of course,
difficult to refuse, and can lead to ugly family conflicts. As
Alexander Capron, a bioethicist at the University of Southern
California, says, "a good medical team knows how to help a
potential donor to say no." Often, doctors simply lie and say
that the relative who does not want to do it is "not a match."

    The most famous controversy over a spurned request led to
the courtroom last year. Tamas Bosze, a Chicago bar owner, was
told that only a marrow transplant could rescue his son
Jean-Pierre, 12, from leukemia. The boy's only potential donors
were twin half-siblings born out of wedlock to the father's
former girlfriend. Bosze sued the woman in an attempt to compel
her to have the children tested for tissue compatibility. She
refused, and a court upheld her decision. Last November,
Jean-Pierre Bosze died.

    Federal law now prohibits any compensation for organs in
the U.S. In China and India, there is a brisk trade in such
organs as kidneys. Will the day come when Americans have a
similar marketplace for organs? Turning the body into a
commodity might in fact make families less willing to donate
organs, says Capron: "A family would be willing to say, `We gave
Joey's kidneys away.' But would they say, `We sold Joey's
kidneys?' I don't think so."

    The new technology of transplants disturbs everyone's
model of the natural order. The human being has not been in the
habit of walking around with someone else's heart in his chest.
Or of breaking into the temple of someone else's body and
making off with its faucets and pipes. There is adventure in the
possibilities, and hope for some who would otherwise be doomed.
But the issues lead into strange, unprecedented territory. It
will require time and experience to explore.