Modern science says that to know everything is to empower. The vast majority of the time, this is very true. I certainly feel empowered when I have complete exposure of facts and truth. The issue I have with standard prenatal testing is the myth that somehow each test that is done will ensure a healthy baby or point out any issues with a baby with special needs. The myth that each procedure (the biggest offenders - the Alphafetoprotein screen and ultrasound - which are not diagnostic, just screens) offers an accurate diagnosis of any issue - and if it's not apparent with these tests then your baby must be ok.
Current evidence shows us that the Alphafetoprotein test, routine ultrasound and the glucose tolerance test all have rather large errors in assisting with an accurate diagnosis. Still, for some reason, these tests are treated as if they are going to make sure your baby is healthy without any discussion regarding false results. If we're really looking at empowering women with knowledge the accuracy rate, along with what the test is screening for and what the path is if an abnormal result is found, should be discussed prior to the test. And women should always have the option of refusing any testing.
We all live very different lives. While some families would choose to terminate a pregnancy based on prenatal testing, other families will not change the course of their pregnancy based on the results. Knowing that for some women the information gained is beneficial, we must also look at what standardized testing can do to many other women (the majority) that are given ominous news regarding what turns out to be a healthy baby.
We cannot ignore the impact of even five weeks of thinking your baby has Down Syndrome, only to find out through an amniocentesis (complete with its own risks) that your baby does not. The emotional impact of that course is huge - even if the woman desired prenatal testing. My issue isn't with the testing alone, but the inability of the medical model to offer full disclosure about testing and it's accuracy. Or how, aside from terminating the pregnancy, there are few if any 'treatments' prenatally for these disorders.
Mothers must choose for themselves what testing they want and why. If the test results will not dictate termination of the pregnancy, care must be taken to discuss how an emotional attachment to the pregnancy/baby will be severed or enhanced with an adverse result. Some people talk about 'getting prepared' while families of special needs babies will tell you that there is no amount of information that can truly prepare you for what you will experience with a birth or a termination of a pregnancy. Those same families can also attest to an emotional detachment that occurs when, knowing the information/status of your baby, you decide to continue the pregnancy.
Prenatal testing involves a family's faith. Each woman, each family must decide for themselves if the accuracy/risks/benefits warrant these tests. For what it's worth, each of my clients receive full informed choice about Chorionic Villus Sampling, Amniocentesis, Ultrasound, AFP Screening, the Glucose Tolerance Test, Group Beta Strep Testing, etc. I've supported - and will continue to support - clients who choose prenatal testing as well as those who painfully choose to end their pregnancy because of test results.
On an emotional levels, we have to consider this: When a provider's office calls with a high positive reading from an AFP screen, does the woman hear anything but "your baby has Down Syndrome"? If she had been educated about the accuracy rates, including the rate of false positives, perhaps she could be more clear in her thinking about the possibility that her baby will NOT have Down Syndrome. In fact, by the time an inconclusive ultrasound comes back after such a call followed by an amniocentesis and the time waiting for results, many women are well into their 22nd or 23rd week of pregnancy.
Here are some great quotes and links for further review on just how standardized, blind (meaning women either don't know what they're being tested for and/or aren't told about the accuracy of the test) prenatal testing impacts us as a culture:
The MSAFP screens for the level of AFP in maternal blood—it is not a diagnostic test.. It is easy to administer and most women choose to accept it. However, research by Carole H. Browner at UCLA Department of Psychiatry and Biobehavioral Sciences, has show that women who ‘choose’ are not always informed about what this test is for and the implications of a positive result, or that it has a high (upwards of 80%) false positive rate. The result is that many women who are otherwise experiencing normal, healthy pregnancies are faced with a positive MSAFP. These women are counseled to consider amniocentesis for a diagnosis.
The readings by Hubbard, Browner and Press and Kaplan all capture the eugenic implications of these prenatal tests in different ways. Browner and Press show how the information provided by the state of California is worded so as to emphasize the "reassurance" provided by the test, and not the fact that so far we have no therapy for the conditions identified by the tests, only termination of the pregnancy. Further work by Browner, Rapp and others have shown that genetic counseling is not as value neutral as we might think. And, as we saw from last week, not all women who desire genetic testing have access to the tests.
These experimental forms of genetic screening are clearly controversial. But even the most common forms of prenatal testing are open to dispute. Despite the matter-of-fact manner in which physicians offer the tests to their patients, their safety has never been scientifically established. Ultrasound, for example, which doctors present as a thoroughly uncontroversial procedure, is still being contested within the medical literature. A classic example of a "creeping technology," ultrasound in pregnancy has never been subjected to a large-scale randomized controlled trial to assess either its safety or usefulness.
The use of AFP tests has a peculiarly nonmedical history. Both ACOG and the American Academy of Pediatrics urged the FDA not to approve early release of AFP test kits in the late 1970s. They noted that in order to detect enough cases of open spina bifida and anencephaly the tests would necessarily have a high false-positive rate-about fifty false positives for every true positive. They recommended that the FDA make its release contingent on laboratories’ ability to coordinate follow-up tests to weed out false positives, a crucial concern in a test parents may rely on in deciding whether to continue a pregnancy. But when the FDA went ahead and approved the marketing of the kits without these restrictions, ACOG’s legal department promptly issued a liability "alert" to its members, urging all obstetricians to offer the procedure to their patients. This, it said, should place the doctor in the "best possible defense position" in the event of a birth defect.
It is also important to realize that most women take these tests without fully considering all of the implications of the test. Most women think of these as a simple blood test, a cursory part of prenatal care. They don't consider that intimately wrapped up in the question of prenatal testing is the moral dilemma of abortion and the thorny issue of eugenics. Barbara Katz Rothman points out:
The history of prenatal diagnosis has roots in the eugenics movement...part of its history has been an attempt to control the gates of life: to decide who is, and who is not, fit to make a contribution to the gene pool.
Katz Rothman is by no means arguing against the use of prenatal testing; she actually presents a number of compelling reasons to consider it. Her writing is a fair and balanced look at the intricacies and difficulties of this issue. But she has found through extensive interviewing of parents involved in such testing that most of them were simply unprepared to confront the scope of the types of decisions presented by prenatal testing, and that choosing such testing often changed the way a woman experienced pregnancy in subtle ways.
The emotional effects of these prenatal tests have not been well studied. This means you need to take responsibility for figuring this out for yourself and for your family.
One of the most obvious effects of all of this testing is that it serves to "medicalize" your pregnancy. Trying to turn a healthy pregnancy into a medical experience can cause unnecessary worry and a tendency to avoid bonding too soon with the developing baby until it is "certain" that everything is okay. Going through these tests can make it easy to forget that birth is a normal process and does not need to be frightening. And remember-none of these tests is foolproof.
In fact, being forced to worry about conditions that ultimately work themselves out (like early diagnosis of placenta previa, for example, picked up in a routine ultrasound) can have negative effects. It is hard to shake off the anxiety of wondering whether everything is okay. Waiting two weeks for the result of an amniocentesis can be very stressful, even if you have every reason to believe that you and your baby are healthy.
Parents who are especially jittery, and think they might feel better after having these tests, need to consider this information even more carefully. You might think that prenatal tests will provide you with a sense of security, but unless there is a true indication of high risk, these tests can be misleading. You can find security by discussing your concerns with your healthcare provider, who will take the time to listen and explain, and by talking with your partner, doula, or friend.
Many women have testing done even though they have no intention of terminating an abnormal pregnancy. This is often because of pressure from family and friends to "find out" if everything is OK, even though these tests offer no guarantees. It can take great courage to say no under pressure. Remember that having prenatal tests done just to appease your family or partner will have consequences for only you. You must carefully think through each step of this decision, and review the possible consequences of prenatal tests, before you decide if they are right for you.
Reading that I recommend to every woman interested in how prenatal testing impacts women and impacts what we perceive as a 'better outcome' in maternal/fetal health include:
Expecting Trouble: The Myth of Preantal Care in America by Thomas Strong, MD
The Tentative Pregnancy by Barbara Katz Rothman
Which Tests for My Unborn Baby? by De Crespigny and Dredge
Informed choice and full disclosure should be the standard in maternity care. We also owe it to women to have an understanding about the impact of prenatal testing on the feelings towards their pregnancy, towards their baby and the choices made along the way.