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GeneWatch
Volume 14 Number 4
July 2001
Human
Germline Engineering and Cloning as Women's Issues
By Marcy Darnovsky
Editorial: Choice in
the Biotechnology Age
By Suzanne Theberge
There
You Go Again, Monsanto!
Commentary by Martin Teitel
On Order
Commentary by Barbara Katz Rothman
Childbearing
in the Age of Biotechnology
By Ruth Hubbard
The Co-Opting of Women's
Choices
By Abby Lippman
The
Safe Seed Pledge: A Move Towards Food Protection
By Amber Beland
Interns Making A Difference
at CRG
Announcement: Adrienne
Asch Joins CRG Board
ABOUT GENEWATCH
GeneWatch
is Americas first and only magazine dedicated to monitoring
biotechnologys social, ethical and environmental consequences.
Since 1983, GeneWatch has covered a broad spectrum
of issues, from genetically engineered foods to biological
weapons, genetic privacy and discrimination, reproductive
technologies, and human cloning.
The centerpiece of the current
GeneWatch is Marcy
Darnovsky's analysis of new sex selection technologies.
We also present the first version of CRG's growing list of
security breaches and accidents at federal biodefense laboratories;
an update by Sujatha Byravan and Sheldon Krimsky of a planned
federal biodefense lab in Boston; Phil Bereano's much-needed
clarification of how international regulatory systems will
interact; and an overview of Chinese biotechnology by Nancy
Chen.
To find out more about subscribing
to GeneWatch and having it delivered to your doorstep six
times a year, just
click here.
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Childbearing in the Age of
Biotechnology
by Ruth Hubbard
The women's health movement of the 1960s
and 1970s rallied around the call of Taking our
Bodies Back.
In doing this, we were responding to
our sense that, over the previous century, the male
medical establishment had taken control of women's bodily
functions by interpreting them as disease. Medical men
had established not just one, but two medical specialties
dealing with womens bodily functions -- obstetrics
and gynecology -- within which menstruation, pregnancy,
birth, lactation, and menopause all were looked on as
pathologies in need of medical intervention.
One way of taking charge of our health led women to
assert control over our experiences of pregnancy and
birth. We advocated for unmedicated childbirth and a
return to midwifery and home birth, and not just for
women who could not afford medical help, but for women
who wanted to experience their pregnancies and births
as normal, social occurrences rather than as medical
phenomena, unless there were specific reasons to go
the medical route.
This independence from medical interventions proved
to be short-lived because soon a series of technical
innovations began to make it possible to monitor fetal
development by means of chemical tests and ultrasound
monitoring. As a result, many women began to feel that,
while it is all very well to reject medical interventions
on our own behalf, of course we want the best for our
children. And, in our society, that tends to mean whatever
interventions and reassurances science and medicine
can offer.
In 1973, when American women acquired the legal right
to terminate unwanted pregnancies, that "best"
came to include an increasing number of prenatal tests
that enable women, and families, to use health indices
to decide whether to bring a pregnancy to term. Let
me say at once that I fully support a womans right
to terminate her pregnancy, whatever her reasons. But,
the fact is that the new predictive medical tests have
opened up a range of supposed "reasons" to
terminate pregnancies that raise hard questions for
women, families, and society.
For one thing, supposedly predictive prenatal tests
have created what the sociologist Barbara Katz Rothman
has aptly called ''tentative" pregnancies. In the
pre-test days, once a woman had embarked on a wanted
pregnancy, she and her family could begin to ready themselves
emotionally and socially for the fact that a new, entirely
unknown person would shortly be joining them. Once supposedly
predictive prenatal tests became available, two new
things happened. One was that a woman who decided to
have her fetus tested could no longer be sure the decision
to have this baby would be final if the test came up
with the "wrong" answer.
The other, quite subtle, result of prenatal testing
is this: after a child is born, if she or he turns out
to have a disability, that condition is just part of
who that child is and the family integrates it into
the total experience of living with her or him. But,
once a test predicts some particular trait -- even though
tests usually cannot predict what that will mean for
either that child or the family -- the test result constricts
the family's imagination. From that moment on, when
the woman imagines her child, all she sees is cystic
fibrosis or spina bifida, or whatever condition the
child has been predicted to have. The child is no longer
a person with desired abilities and traits; it has become
its "predicted" diagnosis. The existence of
supposedly predictive prenatal tests thus profoundly
alters the experience of childbearing. What's more,
once a test exists, only a very determined woman is
likely to resist the medical and societal pressures
to have that test.
Physicians and genetic counselors tend to strongly believe
in the benefits of prenatal testing and therefore subtly
or openly urge it. They are also under considerable
legal pressure to not only make women aware of the existence
of prenatal tests, but to be sure that women and families
understand what they are doing if they refuse to have
their embryo or fetus tested. Families have sued health
care providers who didn't alert them to the existence
of a prenatal test for a condition their child is born
with, or even for not advising them strongly enough
to have the test.
The existence of prenatal tests in itself, therefore,
necessarily impacts women's experience of childbearing.
What is more, with ultrasound imaging, what used to
be private has become a very public experience: friends
and relatives want to see "the baby," meaning
the ultrasound image, and people open web sites in the
name of the fetus, whose sex is usually revealed by
ultrasound. This new approach to childbearing has recast
an experience, which for most women is a normal, healthy
function, into a risky process, requiring constant medical
supervision.
Entire new industries have been developed that produce
technically sophisticated equipment and offer a wide
range of prenatal tests to monitor the course of the
pregnancy and "predict" the potential existence
of one or another, relatively rare health condition.
It is very easy to make expectant mothers worry about
the future health of the baby they are gestating; it
is also very profitable. But the result, as one young
woman recently told me, is that "It is very hard
to be pregnant these days."
Let's stop and think about Down syndrome, the most frequent
condition for which women are tested prenatally. As
with just about all inborn conditions, the expression
of Down syndrome is quite variable. Now that a great
deal has been learned about how to successfully integrate
children with Down syndrome into family life and schools,
more and more people with Down syndrome are being educated,
holding jobs, and living more or less ordinary lives.
(See Michael Berube's recent book, Life As We Know It,
about his family's life with his son Jamie.)
Some people's situation may be such that they do not
feel they can take on the extra expense or work that
having an unusual child is likely to involve. But, having
children is always unpredictable and the most "usual"
child can turn out to be "unusual" in ways
we as parents find difficult to accept. Future parents
are attracted to predictive tests because, once we become
worried, we want to be reassured. And because human
beings are, on the whole, a pretty sturdy lot, most
tests turn out to be negative and so provide that reassurance.
As the range of human variation and difference becomes
more and more medicalized and geneticized, and gets
diagnosed in terms of variations in DNA, we become increasingly
tempted to try to predict what the different variations
will mean for people. This is driven, in part, by curiosity
to foresee the future. But, it is also driven by the
fact that genetic tests constitute just about the only
health related products that are generating profits
for the biotech industry. Other than tests, the industry
has so far offered mostly promises. So, there is lots
of pressure to market tests, and therefore lots of hype
about their presumed benefits.
The overall problem is that we Americans have come to
look at our health not as a continuous, unfolding process,
with variations and ups and downs, but in terms of "risk
factors." And we have a very distorted notion of
what, in fact, produces "risks", which risks
to look out for, and what, if anything, to do about
them.
In fact, the principal risks to newborns' and babies'
health are low and very low birth weight and these usually
are the result of premature birth. And what is responsible
for those? For poor women, it is primarily poverty and
malnutrition. The fact that the New York Times earlier
this year reported that infant mortality is on the increase
in specific parts of New York City, has nothing to do
with "bad genes. It has to do with what is
euphemistically called welfare reform, which has left
large numbers of poor women and families without the
resources they need for a healthful existence.
At the other end of the income spectrum, increasing
numbers of well-to-do, so-called older, women are using
fertility drugs and IVF. Both these interventions increase
the likelihood of having twins, triplets, or higher-order
multiple pregnancies and births. Multiple pregnancies
are likely to result in the babies being born prematurely
and thus with low birth weights. These procedures therefore
also increase the incidence of developmental disabilities.
We need to reexamine the way we have come to think about
our lives. In our continuous struggle to ward off "risk
factors" from before birth till old age, we place
more and more constraints on what constitutes an acceptable
baby, an acceptable body, and acceptable health. The
most effective ways to promote health require societal
and public health policies that make for more healthful
living and working conditions.
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