[Paleopsych] Science-Spirit: Testing Our Ethical Limits
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Fri May 13 15:50:35 UTC 2005
Testing Our Ethical Limits
Reproductive genetic testing promises to screen out fatal diseases,
pinpoint donor matches, and, potentially, design our offspring. Is
that really what we want?
by Trey Popp,
In 1995, Laurie Strongin gave birth to her first child--a son who
carried with him an unexpected inheritance. Henry had Fanconi anemia,
a rare, genetically determined disease that culminates in childhood
death. His only real hope for reaching adolescence was a cord stem
cell transplant from a sibling with the same Human Leukocyte Antigen
(HLA) tissue type. The next year, Strongin and her husband, Allen
Goldberg, had a second son. While Jack beat the one-in-four chance of
having Fanconi anemia, he wasn't a tissue match. Those odds were
It was during that second pregnancy that doctors presented Strongin
and Goldberg with an enticing possibility. It might be possible, they
said, to augment the standard process of in vitro fertilization (IVF)
with a new technique called preimplantation genetic diagnosis (PGD).
This would allow them to screen embryos in a search for one that
didn't have Fanconi anemia and was a donor match. If the resulting
pregnancy was successful, blood from the newborn's umbilical cord,
which contains the hematopoietic stem cells that are more successfully
grafted into a recipient than bone marrow cells, would be used to
change Henry's fate.
"The decision was easy for us," Strongin says. "It felt like it would
save two lives at once." Statistically, it would not be easy to
produce an embryo that had the right set of cell-surface antigens
because not only were the odds long to begin with, but every round of
hormone treatment would produce only a handful of eggs. The first
three cycles didn't yield the right combination, but Strongin and
Goldberg pressed on. The next three cycles went the same way. "It was
a new science," Strongin recalls, "and I think that a lot of times,
new things don't work the first time."
And sometimes, new things don't work at all until it's too late. As
Strongin was going through her ninth cycle, Henry died.
Since that time, at least 2,000 babies have been born with the aid of
PGD. Costs are decreasing, now hovering around $15,000-- of which IVF
constitutes the vast bulk of the expense. Parents have used the
technology to prevent the birth of babies with Tay-Sachs, cystic
fibrosis, Down syndrome, and a variety of other conditions that arise
from single-gene mutations or chromosomal abnormalities. It also has
been used successfully to the same end that eluded Laurie Strongin.
Reproductive genetic testing technologies like PGD are becoming
increasingly common, but, for the most part, are familiar only to
couples burdened either with infertility or unfortunate genes. As with
many new technologies, regulation is haphazard and standard practices
have yet to evolve--which is, in its own right, cause for concern. But
the debate over the ethics of reproductive genetics is gathering
momentum on other levels as well.
"One foundational ethical concern for some of our members is the
notion that screening requires discarding those embryos that don't
meet the prerequired standard," says Carter Snead, general counsel for
The President's Council on Bioethics. "The destruction of embryos is a
source of great ethical disquiet for some members of our council.
"There are also worries from some members of the council that the more
genetic control you're exercising over your child's conception, the
more we move in the direction of manufacture, where children are not
regarded as random gifts, but are regarded as the object of the will
of the parents," Snead continues, adding concerns about the potential
psychological harm done to children selected for a specific trait to
the list of worries. "And this becomes even more amplified when you're
talking about nontherapeutic or nonmedical traits."
Awareness of these issues is beginning to spread to the general
public. The Genetics and Public Policy Center at Johns Hopkins
University recently unveiled what it bills as the most comprehensive
measurement of public opinion about reproductive genetics to date.
"There was a vacuum in the whole area of reproductive genetic policy
because it's so contentious and so divisive that nobody was really
occupying that niche except in an advocacy posture," says Kathy
Hudson, director of the center. "There were the technology enthusiasts
on one end, who are portrayed as having never met a technology they
wouldn't like to try and never met a regulation that they would
support. And at the other end are conservative religious voices who
are very wary of the hand of science intervening in human
What emerged from Hudson's work was a picture with considerably more
nuance--especially in comparison to the rigidly polarized abortion
debate that occupies similar ground. Two-thirds of Americans seem to
be comfortable with the idea of using PGD to prevent fatal childhood
diseases or to produce a tissue match in a case like the one Strongin
and Goldberg faced--even though the technology involves the creation
of some embryos that will be destroyed. Selfdescribed fundamentalist
and evangelical Christians tend to be more wary, but slightly more
than half of them support the use of PGD when searching for an HLA
tissue match. Approval levels do fall across all groups, however, when
it comes to reducing the likelihood of adultonset diseases, choosing a
child's gender, or selecting traits like intelligence or strength
(which is currently impossible).
Unsurprisingly, survey participants of all social and ethnic
backgrounds voiced fears that advances in reproductive genetic
technologies may lead to a new era of eugenics. Yet even those who
advocate some sort of ethics-based regulation are reluctant to limit
their own choices. "I think that people are able to hold, at the same
time, views and values that appear to conflict," Hudson says. "They
are concerned about eugenic applications, but they want to make sure
that individual, private reproductive decisions are protected. So on
the one hand, they're worried. On the other hand, they're worried
about what you would do to address that first worry."
Aside from the general laws governing medical laboratories and the
doctorpatient relationship, there are few rules that specifically
address genetics testing. "It's incredible to me that there is no
regulation whatsoever," says Arthur Caplan, director of the University
of Pennsylvania Center for Bioethics. "There isn't even regulation of
what tests can be offered by whom--forget about whether people should
pick it. If I open up a clinic and say I'm going to do genetic testing
on embryos, I don't even have to satisfy any kind of standard
As a matter of principle, Caplan does not oppose using PGD to weed out
gene mutations or even to select for desirable traits, were such a
thing to become possible. But, he cautions, focusing simply on
reproductive genetic technologies may have the indirect effect of
diverting our attention from more pressing problems. "If there really
was a demand for taller, faster, stronger kids, I would worry that
that might distort the ability of people who are truly sick and truly
disabled to get resources. They don't get them now, frequently, and
there would be even less chance if a lot of our resources went toward
designing our descendants. So I see it more as a justice issue."
The question of equitable distribution of healthcare resources
surfaces often in bioethics circles. Glenn McGee, editor of the
American Journal of Bioethics, has written extensively about
reproductive genetics testing. He observes that evaluating PGD in
economic terms can be a powerful argument in its favor. "PGD framed as
simple medical endeavor is a no-brainer. Take cystic fibrosis: Who
wouldn't say we should have PGD for free for any couple that's at
risk? It costs $2 million, $3 million, $4 million in average lifetime
expenditure, at least half of which is covered by state insurance.
Plus, you've got the social cost of people going bankrupt trying to
care for their child. So why not cover it?"
But not everyone is so certain that doctors, genetics counselors, or
academics ought to be making these kinds of decisions. "Professionals
have stupid ideas about life with disability," says Adrienne Asch, who
teaches ethics at Wellesley College in Massachusetts. "Uninformed,
uneducated, narrow notions. And their curricula and media images and
bioethics have not helped them adequately.
" The idea that cystic fibrosis qualifies as a condition to be
eradicated by PGD infuriates Asch. "The mean life expectancy is over
thirty years for cystic fibrosis. You can live longer than that," she
says. "You can go to school, you can grow up, you can play with your
playmates, you can have friends, you can get married, you can have a
job. Yes, you're going to die, and you're going to die sooner than if
you don't have cystic fibrosis, but you can have a very interesting
and complicated and rich life before you die."
Asch is not alone in arguing against the notion that life with a
disability is to be avoided at all costs. She cites the National Down
Syndrome Congress, the Spina Bifida Association, and similar groups as
allies. "People claim that the only ones who talk about this are
right-wing, religious zealots," Asch says. "They're wrong. Lots of
people talk about what we want out of life."
So what do we want out of life? For better or worse, technologies like
PGD are allowing parents to avoid that question by asking another:
What do we want out of our children? In a free and unregulated market,
services will spring up to offer all kinds of answers. For a little
more than $18,000, a clinic currently operating in California offers
parents PGD solely for the purpose of selecting the gender of their
offspring. Business is good.
"Whatever people say when you poll them, all that really matters is,
are there clients?" says McGee, the bioethicist. "And there just are.
There are clients that want PGD, and the more services that are
offered, the more people line up. It's quite clear from my research
that the more these services become available, the more people will
avail themselves of them."
Looking to the future, McGee worries about the psychological impact
high-tech pregnancies may have on the children resulting from them.
"The birds and the bees are gone," he laments. "With multiple people
involved, you've got the ants and the termites. The children's story
for a child who's made with PGD is just different. There's no fate.
There's no accident. It's all about planned parenthood. And in some
ways, that's a good thing. It's not that it's bad--it's that kids need
to have some sense that they're not a product."
There is little question that now is the time to start thinking about
where reproductive genetic technologies may take us, and who should
have a say in plotting that course. But there is also good cause not
to get carried away. The age of ants and termites has not yet dawned,
and may never. Mark Hughes, the doctor who directed Strongin's PGD
almost a decade ago, cautions that our ability to manipulate
reproductive outcomes is severely limited not just by our lack of
knowledge, but by biology itself.
Single-gene disorders are one thing, he says, but most diseases and
traits are governed by a variety of genes working in concert and
mediated by environmental factors. The odds against the appearance of
a desired trait are only lengthened by the limitations of our
reproductive systems. "Biology is going to put up a wall," Hughes
says, insisting PGD is simply not a sensible tool for customizing
Consider Laurie Strongin, who was overwhelmed by the odds when just
two gene markers were in play. "It's dangerous to simplify this into
something about parental preference and ease of use," she warns.
"Since we went through all this, I've heard people trying to compare
PGD to the idea of designer babies, worrying about parents taking a
willy-nilly approach to their reproductive choices. There's nothing
willy-nilly about choosing life or death."
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