TIME: Almanac 1993/TIME Almanac 1993.iso/time/030590/0305620.000

Text File | 1992-08-28 | 5.4 KB | 113 lines

                                                                                ETHICS, Page 56

Creating a Child to Save Another


A "miracle baby" promises both blessings and controversy


    Many loving parents would not hesitate to sacrifice their
own lives to save their child's. But should they create a new
life to rescue an endangered son or daughter? A Los Angeles
couple, Abe and Mary Ayala, has taken just such an unusual
step. In April, Mary will give birth to a baby girl who was
purposely conceived to serve as a bone-marrow donor for her
ailing older sister. Anissa, 17, was found to have a virulent
form of leukemia nearly two years ago, and her only hope is a
transplant of compatible bone marrow that could allow her to
produce healthy white blood cells. Tests indicate that the baby
has compatible tissue. With marrow from her sister, Anissa has
a 70% chance of being cured. Says Abe of the unborn girl, who
will be named Marissa: "This is our miracle baby."

    As joyous as their news is so far, the Ayalas' actions raise
some unsettling ethical questions. Chief among them: Is it
right to conceive children expressly so that they can be
donors? It is a dilemma that faces increasing numbers of
parents today as researchers make possible more transplants of
organs from living people. For the Ayalas, the drastic measure
was a last resort. Neither Abe nor Mary has marrow that matches
Anissa's. (Reason: her marrow has a mixture of genetic
characteristics from both parents.) Nor does brother Airon, 19,
have marrow that is compatible with his sister's. And a search
for a suitable nonrelated donor has been fruitless to date,
though the hunt continues.

    In the fall of 1988, Mary turned to her husband with a
proposal: "What if we have another child?" In the roll of the
genetic dice, the odds were only 1 in 4 that such a child would
have the right tissue type. And there were other daunting
obstacles. Abe, 44, would have to undergo an operation to
reverse a vasectomy done 16 years earlier, and Mary faced
becoming pregnant at age 42.

    The decision worries some ethicists, who see it as a step
on the path to treating offspring as objects. What if tests
show that a baby conceived to be a donor is not medically
useful? Parents might be tempted to have an abortion and try
again. Babies might be used before birth. For example,
transplants of fetal tissue may one day help victims of
Parkinson's disease or juvenile diabetes. Will babies be
conceived, then aborted to provide fetal tissue? "Children
aren't medicine for other people," declares George Annas, a
professor at Boston University's medical school. "Children are
themselves."

    In truth, motives for having babies are never selfless.
Children are called to life by adult desires: to experience
parenthood, to have an heir, to ensure that a youngster is not
an only child. "In a sense we all have children to use them,"
says bioethicist Michael Shapiro of the University of Southern
California. And motives can be mixed. Mary Ayala has long
wanted a third child. Abe points out that "if Anissa didn't
survive, we'd have another child in the house to help us with
our sense of loss." Human needs are so tangled that no one
expects -- or wants -- to create rules setting forth acceptable
reasons for having a child.

    But at least some restrictions on using children as donors
seem to be justified. Since infants and youngsters obviously
cannot rationally weigh the risks to themselves against the
benefits to others, parents are legally entrusted with such
decisions. But the parents can hardly be objective in balancing
one child's needs against another's. The operation that Marissa
may undergo, perhaps when she is six months old, is far simpler
than organ transplants. After anesthetizing the infant, doctors
will insert a needle into her hipbone and take out a small
amount of marrow. The pain will be slight, the risks minimal,
and the marrow will regenerate.

    The ethical dilemmas of creating a child donor could have
been avoided if a suitable non-sibling donor had been
available. Experts urge that more money and public-education
efforts be devoted to expanding the national registry of
potential bone-marrow donors.

    Some ethicists believe parents like the Ayalas have a
conflict of interest and that an outside legal guardian should
serve as advocate for an infant. But others argue that such an
intrusion is usually unnecessary. Families are guided by
different principles than individuals, and a family's survival
is recognized as a legitimate goal. "We expect family members
to care about each other and to sacrifice themselves to some
extent," notes Mary Coombs, a professor at the University of
Miami law school.

    By all appearances the Ayalas are not an exploitative
family. To them the ethical questions that swirl around them
are airy abstractions, not the terrifying reality they daily
confront. A frightened Anissa has lately taken to dragging her
mattress into her parents' bedroom each night. For her, there
is no debate about how her family views soon-to-arrive Marissa.
"She's my baby sister," Anissa declares. "And we're going to
love her for who she is, not for what she can give me." Who is
to say which sister is the luckier?


By Anastasia Toufexis. Reported by Georgia Harbison/New York and
James Willwerth/Los Angeles.