With today being Veterans Day in the United States, let’s see what the Department of Defense says about prenatal testing for Down syndrome.
Through a simple on-line search, anyone can access the publicly-available “VA/DoD Clinical Practice Guideline for Pregnancy Management.” Below are the excerpts that I thought worth quoting:
- Due to the complex nature of the testing strategies, the potential harm of both screening and diagnostic testing, their varied local availability, and their inherent elective nature, it is imperative that detailed counseling be provided to the prospective mother prior to electing or declining a specific testing strategy.
- The decision whether or not to undergo a screening strategy or diagnostic test should be greatly influenced by whether or not the woman would consider pregnancy termination for an anomalous fetus (ACOG, 2007). Thus, this issue should be addressed when counseling women about screening and diagnostic testing. ¶Women who would continue a pregnancy regardless of the result of screening or diagnostic testing should be less inclined to undergo screening or diagnostic testing because the results are not likely to provide her with useful information, except the reassurance that comes with a low-risk screening test. Accordingly, the women who would most benefit from a normal/low-risk result are women who started out high-risk e.g. women > 35 years of age (ACOG, 2007; Berkowitz et al., 2006). ¶Women who would consider pregnancy termination should be more likely to undergo screening testing because they would be more likely to undergo diagnostic testing in the event of an abnormal test (Berkowitz et al., 2006).
- To date, there is no clear evidence that data obtained from prenatal aneuploidy screening or testing provides any utility in terms of improving outcome for the fetus. Ultimately, the potential benefit of screening and diagnostic testing is to provide information to the pregnant women and her involved partner/family. Whether or not the test is useful for the pregnant women and her partner/family depends on their perceived benefits of the testing.
- Pre-test counseling should emphasize that the decision to undergo screening must be made by the woman after she has considered a number of factors, including personal attitudes and beliefs concerning miscarriage, elective pregnancy termination, birth of a child with a major birth defect or aneuploidy, and the potential anxiety associated with false-positive screening results.
Each of these quoted sections is a notable improvement over other professional medical guidelines concerning prenatal testing:
- It recommends pre-test counseling that concerns personal attitudes and the anxiety associated with prenatal tsting, something not addressed–or not to this extent–in the professional medical guidelines issued by ACOG and ACMG.
- It puts the issue of pregnancy termination at the start of the conversation about prenatal testing, when too often women are surprised at being confronted with that decision after they have gone through prenatal testing.
- The guidelines acknowledge the lack of evidence of any utility of prenatal testing in improving the outcome for the fetus, leaving that value of the information provided by prenatal testing to be assigned by the expectant parents. This raises the question of whether prenatal testing should be considered an essential health benefit for healthcare insurance coverage when the U.S. Government through the DoD and Veterans Administration acknowledge it lacks clinical utility.
The full recommendations are available at this link as a .pdf. I commend to you to read the whole section on prenatal screening for fetal chromosomal abnormalities, if so inclined. That section is at pages 68 – 75, and Appendix E, starting at page 125, includes a decision flow-chart. While the guidelines are from 2009, no substantive changes were made to the recommendations concerning Down syndrome prenatal testing (Section I-36 of the on-line recommendations).
Because these guidelines were published before the advent of non-invasive prenatal screening, that testing option is not addressed. According to the NIPS labs websites and press releases, Natera and Verinata are offering their tests at no-cost to individuals covered by TRICARE, the health insurance for military members, while Sequenom’s test is covered depending on the patient’s plan with TRICARE.
UPDATE: This is the first in a series of posts analyzing the DOD/VA recommendations regarding prenatal testing. Here are links to the rest of the series:
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