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 America’s first and only magazine dedicated to monitoring biotechnology’s 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.

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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 women’s 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 woman’s 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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