Yesterday’s post shared how the Department of Defense/Veterans Administration guidelines recognize the need for genetic counseling when offering prenatal testing. One of the methods was group counseling, in which the guidelines said participants learned best as compared to individual counseling or decision aids. What do participants choose then, that have learned best through group counseling?
At the Madigan Army Medical Center, genetic counselors conducted a study of over 400 patients. About 75% of the participants received individual counseling and 25% participated in group counseling sessions. Here’s what the counselors found:
- Before counseling, both groups had about the same level of knowledge about prenatal testing and Down syndrome, meaning they answered questions correctly and incorrectly about the same.
- As should be expected, both groups reported significant increases in knowledge after counseling, answering a higher percentage of questions correctly.
- Those who participated in group counseling had a higher percentage of correct answers than those just receiving individual counseling.
- And, those who received group counseling were less likely to accept prenatal screening.
So, group counseling increased understanding about prenatal testing and Down syndrome, as compared to individual counseling by itself. And, with that improved knowledge, the study’s finding suggest improved patient knowledge reduced the acceptance of prenatal testing.
That may seem paradoxical and counter-intuitive: if the patients understood screening testing, what its results meant, and what Down syndrome is, then why did fewer accept the testing? Perhaps it’s because the patients understood screening testing, what its results meant, and what Down syndrome is.
The authors are conscientious in noting the parameters of their study. This was a study done at a military hospital where the mean age of patients was 25, with only 7% being 35 or older. The younger population of patients may inform the reduced rate of accepting prenatal testing, as the probability of having a child with Down syndrome is lower than for women over the age of 35, and, therefore, may not be considered as significant of a concern by younger moms.
Finally, the authors further note that this study was carried out before the introduction of non-invasive prenatal screening (NIPS). Regarding the newest form of testing, the authors offer:
With the use of [NIPS], many patient will be receiving an almost definitive diagnosis for certain aneuploidy disorders in the first trimester of pregnancy. This has raised many ethical considerations including how to deliver this kind of information to patients who have likely been given only minimal information through their primary obstetrician. The need to provide appropriate pre-test counseling and informed consent from women considering this test is of the utmost importance and should emulate the counseling provided to patients considering diagnostic procedures such as CVS and amniocentesis.
With more knowledge about prenatal screening, this study found fewer women accepted it. But, the opportunity to raise patients understanding about prenatal screening and Down syndrome will likely be reduced with non-invasive prenatal screening. The need for pre-test counseling recognized by the DoD/VA and demonstrated by the results of this study therefore is justified even more in this new age of prenatal genetic testing.
I am skeptical that reductions in NIP testing would result from better counseling/public education. Currently, I am a pregnant woman (who opted for any and all noninvasive testing), and I have been active on pregnancy websites. This study, coming about before NIPT, was most surely focused on the NT/ maternal serum screening tests as well as CVS/amnio. There is a lot of skepticism about both types of prenatal tests, with the noninvasive NT/serum screenings especially loathed by pregnant women. These screens simply look at proteins and hormones present in maternal blood that MIGHT relate to aneuploidies but might relate to other conditions as well. There is also a lot of dismay about how results are presented: as odds ratios telling you you are at high risk or low risk for a chance with a baby with some sort of chromosomal condition. Depending on state or lab cutoffs, high risk can be 1:270 chance for the baby having T21, T18, T13. What this effectively means is that 270 will be told they are high risk for a certain aneuploidy, when 269 of those babies will be born without the aneuploidy. There’s a lot of anxiety tied up in the ambiguity of that, and many pregnant women out there in cyberspace at least fuel a discourse of this ambiguity negating any value in the test. Amnio and cvs are unpopular because of the risk to the fetus.
For the record, I see an entirely different discourse about NIPT. The screening is directly on placental DNA, so the ambiguity seen with the serum screenings is eliminated and the results are very clearly about the baby and not the mom and what is or is not in her blood. Women are able to distinguish across the types of tests, and the clear feeling seems to be this is the best option of the three choices (serum, NIPT, or karotyping). I have a hard time believing more genetic counseling or public education will do anything to dispel this. While I know your website has grave concerns about false positives from NIPT, the most common existing prenatal screen (NT with serum screening) also leads to lots of women getting “false screen positives” so I am really failing to see why NIPT is a worse or more problematic option for pregnant women than the testing that currently exists. I am also wondering if you are making the argument that information about Down Syndrome being disseminatd before prenatal testing is discouraging women from testing? I only read your blog post, and it seems implicit in your argument but I see no evidence of that.
I read your blog from time to time in order to challenge my own thoughts about the possiblity of a surprise birth diagnosis (since my testing thus far suggests no aneuploidy). While I admire your tenacity, I remain unconvinced of the perils of these new prenatal tests and I am REALLY skeptical that the trendline will move in the direction of less testing if better counseling becomes standard. Why are these tests more threatening to you than the existing tests? I have been curious about that for awhile. I mean, I presume it has to do with the idea they’re available slightly earlier than the NT testing/ 1st tri serum screen and therefore facilitate abortion more readily…But, is that the crux of it? It seems to me the recommendation is for diagnostic testing if NIPT shows a positive, as is the case with the early trimester screening. I don’t see how it’s all that great a departure from existing practice, myself.